Welcome - Genetic Alliancegeneticalliance.org/sites/default/files/advocacyatlas/tash_trainin… · Web viewLearned helplessness is a concept developed by Maier and Seligman (1976)

Table of ContentsTrainer Welcome…………………………………………………………………………………Training Prep……………………………………………………………………………………..Starting the Training……………………………………………………………………………Participant Welcome ............................................................................................Acknowledgements ............................................................................................. Background on Family

The TASH Family Support Training Project is supported by a grant (#90DN0266) from the Administration on Developmental Disabilities, Administration for Children and Families, U.S. Department of Health and Human Services and a grant from the Walmart Foundation. Material for the training was adapted from the curriculum, Family Support, Self-Determination and Disability, Susan Yuan (2001), developed at the Center on Disability and Community Inclusion, University of Vermont, with funding from a previous ADD Grant.

Family Support, Culture and Disability Training

Series

TRAINER WORKBOOK

Support ............................................................................ Goals for the Training .........................................................................................What are we learning? ...................................................................................... Training ActivitiesPart 1. Exploring Family SupportIntroductions ................................................................................................... Planning around a Family’s Needs .................................................................. Family Systems Approach ………………………………………………………………… How Has Disability Changed Your Family?....................................................... One Model of Coping and Adjustment ............................................................. Adjustment and Coping …………..................................................................... Stress, Supports, Perceptions ......................................................................... Times of Stress in the Family Lifecycle ……………………………………………….. Independence, Dependence, Interdependence, Reciprocity ............................. Learned Helplessness ..................................................................................... Rebuilding Hope ……………………………………………………………………………. Thinking about Empowering Practices ............................................................ Principles to Practice: Identifying Indicators …………………………………………. Part 2. Cultural Models, Advocacy and Leadership Individual and Family Values .......................................................................... Cultural Identity ............................................................................................. How Language Shapes Values ........................................................................ Folk Medicine – One Example of Culture in our Lives ...................................... Child-Raising – Another Example of Culture in our Lives ………………………… Basic Cultural Assumptions Underlying Family Support ………..……………. Exploring Cultural Reciprocity in Serving Families .......................................... Applying Cultural Adaptations to the Planning Process ................................... Cultural Attitudes toward Disability ...............................................................

HandoutsFamily Empowerment Scale …………………………………………………………………Advocate Empowerment Scale ……………………………………………………………… 2

Throughout the trainer workbook, you’ll find helpful tidbits in boxes like this one…be sure to check

them out!

You’re a Trainer! Now what?This workshop is designed to be offered by family members and self-advocates who can draw on their personal experiences to provide examples. Mentor trainers will support state trainers at training events and help state trainers develop comfort and confidence in implementing the training.

This training is designed for discussion, not lecture! The training assumes the participants know more than they realize. The exercises draw out the thoughts and past experience of the participants, which are then shared with the group and occasionally summarized with a brief mini-lecture. The participants are led to teach one another.

No concept is “debunked.” Ideas are explored for what they contribute to understanding. These ideas can be challenged by presenting concerns or examples and discussing these. By exploring both sides (a dialectical discussion), participants may come to a new understanding.

Negative judgments aren’t allowed to stand without including recognition of other perspectives.

Notes about the trainer workbook: Detailed trainer information is written throughout the workbook.

These notes include further explanation of the purpose of the exercise/discussion, ideas for implementing the exercise, and discussion points.

Time limits for the training components are indicated at the beginning of each exercise/discussion section. These time limits will help you complete the whole training within two days. It is a difficult balance to determine whether an exercise or discussion is so rich that you allot more

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time or if you should move on to other training components. We suggest you make these decisions in consensus with your co-trainers.

Paper materials that you need for each of the exercises are included at the back of the workbook. For a listing of these materials, see the Table of Contents.

The trainer workbook includes all content from the participant workbook so you are aware of exactly what information the training participants have access to while you are presenting the training. Participants do not have access to time limits, trainer tips, and handout materials in their workbooks.

Preparing for the training: Read directions for each exercise Copy one set of the Family Roles handout for every 5 to 7 students, and cut

apart Copy the Scenario Descriptions handout and cut apart (one set) Print out two copies of Family and Advocate Empowerment Scales for all

participants

To Bring:

o list of participantso sign-up sheetso name tagso a mobile, preferably with figures or pictures of peopleo flipchart papero markerso masking tapeo refreshments and snacks, if possibleo workshop toys o loud noise-maker, such as a bell, a gong, or maracas. This will be used to get

the attention of participants when they are talking, so you will not have to shout. It can also be used to signal the end of small group work.

o 3-minute hourglass. If you find that some participants are dominating the conversation, you can use the hourglass in a prominent place to control each person’s time fairly.

At the training: Post signs directing students to room Arrange tables and chairs into small groups Put out supplies, participant workbooks, and workshop toys on the tables Play music in the background as participants are assembling (optional)

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Kicking off the training:Hopes and expectations: This list should be generated at the beginning of the workshop with large group brainstorming. Because the curriculum is broad, most of the expectations can be met. If you find someone who clearly has expectations that the workshop is not designed to fulfill, it is best to identify that clearly at this point, so that the person has a clear choice about remaining in the class. Save the list, and review it periodically during the workshop to help participants see that their expectations are being met.

Class norms: Like hopes and expectations, generate this list at the beginning of the workshop with large group brainstorming. Make sure the norms include respectful communication and confidentiality, and that everyone agrees to abide by these norms.

Family Empowerment/Advocate Empowerment (FES/AES) Scale: Distribute Family or Advocate Empowerment Scale to all participants. Instruct them to fill it out to the best of their ability, making sure to fill in the date and circling “Before Training” for when the FES/AES was taken. Instruct participants that the request for their name is ONLY to link pre- and post-training documents together to determine results. The scores are NOT linked to the participant. Participants have the option not to put their name on the papers.

Now, go forth and train!

Welcome!

Dear self-advocates and families,

Welcome to the Family Support, Culture and Disability workshop! We are looking forward to the ideas and experiences you bring to this project, because we know we will learn from you as you learn from the materials, the trainers and each other.

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This material was originally developed by family members with a grant from the U.S. Administration on Developmental Disabilities. The focus of the cases and examples in this training is on individuals with disabilities and families that include members with developmental disabilities, including emotional and behavioral challenges. We are proud to continue the work of the Family Support movement by adapting and translating the original materials to make them more welcoming to self-advocates and families of all backgrounds.

We believe that all families experience stress at some point and benefit from respectful, responsive support. We are committed to our belief in the strength of people with disabilities and their families and their power to determine what they need. Over time, we believe that stressed families can get their feet under them, see positive changes in their lives, celebrate their own ability and control, and in turn, help other individuals and their families.

This training is based on your participation, with time spent on exercises and discussion. Lectures are kept to a minimum. We can recommend additional readings if you want to explore these ideas more deeply. AcknowledgementsState TrainersDeborah Abraham, CaliforniaRobin Blount, GeorgiaDianne Bynoe, Virgin IslandsAna Canevaro, TexasDiane Connell, IllinoisJoyce Davila, Puerto RicoJacquie Devereaux, OklahomaSaskia Dula-Klontz, TexasRenaldo Fowler, ArizonaJairo Guiza, CaliforniaMelanie Haswood, Arizona Marcy Hayden, South CarolinaBrenetta Henry, ConnecticutKathy Holsopple, VermontHilde Hyde, Vermont

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StaffBarbara Trader, Executive DirectorDara Baldwin, Advocacy & External Relations ManagerJonathan Riethmaier, Advocacy Communications ManagerHaley Kimmet, Grassroots Engagement Manager

Mentor TrainersShelley Dumas, TexasPhil Smith, MichiganSusan Yuan, Vermont 7

Karen Irick, South CarolinaTeri Kendle, CaliforniaMike Kiser, OklahomaGinger Kwan, WashingtonLeslie Lederer, KentuckyMat McCollough, Washington, DCEllen Nicholson, KentuckyMark Partin, ConnecticutJoy Prior, VermontStacey Ramirez, GeorgiaJuliana Recio, Washington, DCCarmen Rodriguez, Puerto RicoSandra Ross, Virgin IslandsAarti Saghal, GeorgiaAndrea Smith, IllinoisKhadijah Toms, WashingtonNancy Ward, Oklahoma

Background on Family Support

What is the importance of Family Support and why do we need to talk about it?There is a “culture” of family support that families run into when working with professionals and other families.

To help you move effectively within this culture, this training:

Goes through activities and exercises that explore ideas of family support and culture so you can decide what works for you

Gives you the tools you need to make things work better for you and your family

A family is an interactive group rather than just a collection of individuals. Everything that impacts one member of a family will have some impact, whether less or more, on other members of that family.

Life events can disrupt a family’s balance and create a need to restore balance. When parents are focused on the particular needs of the member with a disability, it may be difficult for them to notice the impact on others in the family. Parents need to be aware of the needs of the entire family while the needs of the individual are addressed.

Until the mid-1980s, the experience of having a family member with a disability (or acquiring a disability later in life) was looked at as a negative experience that involved a process of coping and adjustment.

At that time, family support often used a grieving model that started with shock and denial and proceeded to acceptance. Over time, families and researchers began to question the negative tone this model put on the experience. Family support

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researchers asked why some families experienced sadness, sorrow, depression and long-term grief and why others identified positive experience and impact on their family from the individual with a disability. Why did some families have a more positive outcome than other families?

Some people say that the child with a disability is the stressor on the family system, but others say that the child is a part of the family and the stress often comes from the demands of interacting with other systems, like schools, disability services, health care systems, and sometimes even extended family members. The stress can often be from a lack of something, like sufficient money, housing, or other supports.

Stress can cause a negative impact on the family, with things sometimes going from bad to worse as the family works to regain balance. However, we can begin to recognize the presence of good support. This may come from family, friends or professionals, whether it is financial or emotional support, or just the opportunity for a break. One of the most effective supports can be the outrageous humor of other families “in the same boat.” Good support can overcome the bad effects of stress and turn things around for a family so that their circumstances begin to get better.

The second factor that can change the impact of stress is how the family views the situation. Everyone is impacted by the cultural attitudes our society has toward disability. Did you know people with disabilities in your school or community? Was disability seen as a natural part of human experience or were people with disabilities hidden away?

Some cultures believe a disability is a punishment for something done (or not done) by the parents or their ancestors. Other cultures believe a child with a disability represents a purity of soul, and revere that child. Others believe a disability is simply a call to change the environment to accommodate the needs.

Just as good support can help a family turn a negative situation into a more positive one, opportunities to explore and change how you look at people with disabilities can help you and your family move towards more positive outcomes. You can gain greater appreciation of the strengths of your family knowing that you can take control of the situation and make things happen that improve the circumstances.

Do you believe that you have the ability to control the things that happen in your life or do you believe that things happen and you’re just “along for the ride?” We each make a judgment on whether we think we are capable of doing something or not. For instance, parents may not believe they are capable of testifying in the state legislature. Through the encouragement of others, watching other parents testify, and by trying a short piece of testimony themselves and experiencing success, they may build their sense of ability and confidence to testify the next time around. The methods of building this sense of ability are important in turning around the feelings of helplessness that a family may have learned from repeated experiences of frustration and lack of power to change things.

Family support is rooted in developing an understanding of where you’re coming from so you can better realize your current situation.

Goals for the Training

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What are we learning?

Part 1. Exploring Family SupportThis part of the training defines the values base for the curriculum, a family-centered approach which views individuals and family members as interdependent parts of a family system. Emphasis is placed on strengths and resources which assist families in coping and adjustment, as well as positive contributions of people with disabilities to their families. Programs and service providers are viewed as effective to the extent

1) Personal growth – Encourage more positive attitudes toward disability for you and your family, attitudinal change, or a deeper understanding of how your family looks at disability

2) Enhanced understanding of how the movement affects you and your community

3) Examine the impact of culture on service delivery options

4) Examine the impact of culture on access to services and supports

5) Explore the dynamics of family interaction and their strengths as well as their impact on family support

6) Build an interconnected network

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that they enable families to exercise power and control over the supports they receive and ultimately over their own family lives. Areas covered include:

understanding how families work together understanding individual family culture and planning building interdependence using a positive, strengths-based approach changing how we look at adjustment and coping changing how we make decisions in family supports analyzing power empowering families; family-driven approach

Part 2. Cultural Models, Advocacy and LeadershipThis part of the training will help us develop awareness of the cultural basis for our value systems. We will pay attention to attitudes that may lead to judging the choices and actions of families from other cultural backgrounds. In the area of family and disability issues, we will explore the values of our culture related to mainstream expectations and how to balance the two. We will also look at cultural attitudes related to communication and program planning. Areas covered include:

exploring individual cultural values- toward family- toward child-raising- toward disability

understanding how language shapes values discovering other cultural values cultural reciprocity uncovering cultural assumptions in program planning identifying how cultural practices influence communication building culturally respectful family support

Part 1. Exploring Family SupportINTRODUCTIONSTIME LIMIT: 30 minutes (depending on the workshop size)

What participants will get out of this exercise:

Meet and get to know other participants in the training Practice good listening

Participant Instructions:

1) Split into groups of two. 2) Have one person talk about themselves while one person listens

silently for 2 minutes. 3) Switch the talker and listener for the next 2 minutes.4) Introduce your partner very briefly to the group; saying what you feel

is the most important fact about them.

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Before you begin… Have you administered the Family/Advocate Empowerment Scale? Be sure to do this before you get started on Introductions!

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The easiest way to divide a group is by counting off. NEVER MOVE THE PARTICIPANTS INTO GROUPS BEFORE YOU HAVE GIVEN ALL THE INSTRUCTIONS FOR THE EXERCISE!

Trainer Instructions:1) As a group, process the exercise, asking participants the following:

a) What did it feel like not being able to speak? As the listener? As the speaker?

b) What did the listener do non-verbally to help the speaker?c) How accurate was your memory without notes?d) Did the two of you identify the same fact as the most important?e) Did each introduction take the full two minutes? Why?f) Would there be any problems in using this exercise in the

specific culture you represent?g) Would non-verbal communication be different in this exercise in

different cultures?h) Does the use of silence differ culturally? How?i) When would you use "silent listening" in your work?

2) Point out the tendency we all have to listen for “commonalities” we have with the person speaking. Discuss why it is best to wait to talk about commonalities until the person has finished speaking. However, if talking about things in common helps people build trust between one another and provides a pathway to more meaningful information, allow for this sharing for a short period of time and then move on.

EXERCISE: Planning around a Family’s NeedsTIME LIMIT: 60 minutes


Build awareness and sensitivity to how different family members look at things

See how the person with the disability is included within the family and how we can be aware of what they want

Look at differences between child/person-centered planning and family-centered planning

Instructions:

1) Split into groups of 5 or 6 and choose someone to take notes.

2) Trainers will provide your group with a situation card. Have one person read it out loud to your group.

3) Identify who in the group will take on the role of the individual with a disability.

4) Without looking, everyone else in your group should select a family role card.

5) Look at your role and discuss with the rest of the group how the situation and actions to take as a result of it would impact you if you were that individual or family member.

6) Think about the whether the impact of the interventions on the whole

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This section includes background information that may be helpful to reference as you go through the exercise.

family is positive or negative. 7) Suggest ways to improve the impact on the family (family-centered

actions).

Trainer Instructions:

Materials Needed: Role cards Scenario cards

Relevant Information:On Card 3, involving the baby with special health needs, the interventions mentioned are not really considered interventions, but rather simply the reality of the situation to which the family is adjusting.

One situation refers to facilitated communication, a controversial technique which you may need to define for some students. The following description is from the Syracuse University Record, "Questions and Answers About Facilitated Communication" by Douglas Biklen, Facilitated Communication Institute.

"...In facilitation a parent, friend, teacher, speech language clinician or other communication partner provides physical and emotional support as the person with a communication disability tries to point in order to communicate. The method can involve pointing at pictures or letters. The physical support may include: assistance in isolating the index finger; stabilizing the arm to overcome tremor; backward resistance on the arm to slow the pace of pointing or to overcome impulsiveness; a touch of the forearm, elbow, or shoulder to help the person initiate typing; or pulling back on the arm or wrist to help the person not strike a target repetitively. Emotional support involves providing encouragement but not direction."'

There is hardly a more controversial subject than the validity of "F.C." An annotated bibliography presenting studies on both sides of the question has been prepared and is being updated by Koppenhofer, J., Gilmer, D. & McElroy, M. (1993), (207)581-1084. Among the most important works supporting the validity and explaining the underlying processes are Biklen, D. & Cardinal, D. (Eds). (in press) and Donnellan, A. & Leary, M. (1994). For arguments opposing F.C.'s validity, see Jacobson, Mulick & Schwartz (1995), and Shane, H.C. (1994). Whole journal issues have been devoted to the controversy, such as the Journal of the Association for Persons with Severe Handicaps. Vol. 19 (3), Fall 1994, and an issue of the American Journal of Mental Retardation (1996).

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These materials are included in the back of the workbook on pages

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Another controversial intervention used primarily with people with autism is auditory integration training, mentioned in Card 1. Developed in France in the 1960's by Guy Berard, AIT "is based on the theory that behavioral and cognitive problems may arise when people perceive sounds in a 'differential' manner. If certain frequencies are perceived much better than other frequencies, sounds may be perceived in a distorted manner and may lead to difficulties in comprehension and behavior. The purpose of AIT is to reduce distortions and hypersensitivity to specific frequencies..." (C. Hotaling. (1992), p. 1). This procedure requires the use of an "audiokinetron" which is not particularly portable, requiring people to come to a specific place for the therapy. References on this method include Berard, G. (1993), and Rimland, B. & Edelson, S. (1995). One of the reasons for including these examples is that families will often try to find an “intervention” that will help their child. It is important to understand the family’s choice, whether or not you agree with the methods).

INFORMATION AND DISCUSSION: Family Systems ApproachTIME LIMIT: 10 minutes

What participants will get out of this discussion:

Understanding of the interconnections of members in a family system

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Awareness of how a crisis impacts the balances in a family system Identify the lasting impact of a crisis on reestablished balances within

the family system


Materials Needed: Mobile or dreamcatcher

1) Ask participants how the experience of the last exercise differed from the child-centered or person-centered approach. (They considered the impact of each intervention from the point of view of each member of the family, as well as from the overall perspective of the family as a whole (family systems approach). Also, in the child-centered or individual-centered approach, often the needs of the child or individual are seen as separate from or in opposition to those of the family. In the family-centered, family systems approach, the attempt is made to balance and coordinate these needs more holistically.)

2) Ask if anyone in the class has ever seen the John Bradshaw TV series on the family. (Usually several have, although it was several years ago.)

3) Refer to the analogy Bradshaw makes to the family as a mobile. 4) Use a mobile as your visual aid. When a stress or demand is made

on one member of the family, it can be compared to pulling on one part of a mobile. Every other part of the mobile will jump around. If the stress is released, the balance returns. If something is changed, like a weight put on one part of the mobile, when the balances are restored, the other parts of the mobile will be in a different place from where they started. Families are like that. When something traumatic happens to one or more of the family members, everything will be knocked out of balance. Over time the balances will reestablish themselves, but not necessarily in the same place as before. Everyone is connected and responsive.

5) If time permits, invite students to share experiences from their own families to illustrate. This sharing should be totally voluntary, with no pressure, as the group has not been together long enough to build the trust necessary for comfort in revealing emotional information.

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Remember the time limits for this: 15 minutes for each of the two speakers,Controlling the time in this exercise can be a real challenge. The questions are an example of “set questions” which can guide listening in an interview without necessarily being asked directly.

PAIRED INTERVIEW: How has being a person with a disability or having a family member with a disability changed your family?TIME LIMIT: 30 minutes

What participants will get out of this interview:

Understanding of the family experience Practice identifying family strengths and needs

Instructions:

1) Pair up with someone you don’t know well. 2) Ask your partner - How has being a person with a

disability or having a family member with a disability changed your family?

3) See if your partner answers any of the questions below as they answer your first question.

4) When your partner has finished, switch and tell your own story.

o How did the experience of being a person with a disability or having a family member with a disability change over time?

o What adjustments did your family make to accommodate for the changing situation?

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o How did the balances in your family change?o What roles did professionals play?o What attitudes towards professional involvement did your family form

from their experiences?o What strengths have helped your family?o What unmet or ongoing needs do you

hear?


Additional discussion questions:1) In your culture, would families share their stories freely?2) What would be some of the factors in their willingness to tell their

stories?3) How could you make it more comfortable for them to tell their stories?

INFORMATION AND DISCUSSION: Model of Adjustment and CopingTIME LIMIT: 15 minutes


Understanding of a popular model that relates to your experience as an individual with a disability or as a family member

Determine strengths and weaknesses of this model as they relate to you


Materials Needed: Kubler-Ross (1969) grieving stage model powerpoint slide (or use

flipchart to illustrate it)

1) Ask the group if anyone is familiar with any models of coping and adjustment for someone dealing with a stressful event. Record responses.

o If the group starts mentioning family-centered practices, mention that these are good strategies for supporting families, but you are looking for a model that explains what families go through. Someone will be likely to come up with it or pieces of it.

2) If not, ask if anyone has heard of Elisabeth Kubler-Ross. See if the group can identify the stages in the model before you put up the overhead or use the board or flipchart to outline it.

3) Ask the group to:

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o Identify the positive contributions of this model to the field of family support, being sure to separate positive answers from negative answers (if any arise) on flipchart paper.

o Identify what possible problems may come up in applying this model to individuals with a disability and their families.

Relevant Information:Among the positives that should emerge are that the model "allows" people to experience a range of emotions, and considers this normal. It gives a framework for people to understand what they are going through, and gives them the eventual expectation that things will feel better. It gives explanations to people working with families for the reactions of people to the supports and services offered. Among the negatives that should emerge are that the model is linear-- people are supposed to progress in a direction, ideally ultimately reaching adjustment. This model does allow for some movement back and forth, but is primarily progressive and linear. The model sets up expectations for families that may not parallel the real experience for the family--i.e., at one point they are supposed to be in denial; they are eventually supposed to come to acceptance; they are experiencing a sense of loss. This model can often lead to stereotyping families, labeling them as "stuck" in one of the negative stages--anger, denial, etc. This can feel patronizing, because it presumes that the helper knows what the family is going through. This model was developed to deal with loss—with a negative event. Regarding disability as a tragedy to be grieved may be fundamentally incompatible with the disability rights movement.

Additional discussion question:

How does this model fit with different cultural perceptions of the experience?

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Save the flipcharts from this exercise. Various groups around the country using this curriculum may decide to compile them into a book. It will be interesting to see if there are cultural variations which emerge from this TASH training.

EXERCISE: Develop your own Model of Adjustment and CopingTIME LIMIT: 45 minutes


Create a model that reflects your own experience and ideas

Build confidence and support with other self-advocates and families

Instructions:

1) Divide into small groups and choose a person to take notes. 2) Based on your experience and the stories you have heard

today, come up with a different model of coping and adjustment that fits the experience of people in your group and illustrate it with pictures.

3) Record your group’s model on flipchart paper and share with the whole group.


1) Briefly discuss the questions, "What is a model?" and “Why do we create models?”o Among the ideas that should emerge is that a model is a mental

construct or way of looking at a situation that helps us to understand situations and phenomena. If the construct feels too constricting, if too many exceptions begin to appear, it may be time to change the model. Problems arise when an out of-date model continues to be applied to situations which have moved beyond it.

EXERCISE: Stress, Supports, PerceptionsTIME LIMIT: 15 minutes

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Understanding of the emotional patterns individuals with disabilities and families go through and what helps them

Instructions:

Three stations are set up with paper and markers. One station is for “Stressors,” the next station is for “Supports,” and the third is for “Perceptions.”

1) You will be assigned to a group that rotates through the stations.

2) At stations: Stressors - Think about the experience of being an individual with a disability or having a family member with a disability, then identify all “stressors” in your life.

Supports - Identify all “supports” in your life that help you

Perceptions - Identify all the ways you look at the experience of being an individual with a disability or having a family member with a disability

3) Brainstorm quickly, making as long a list as possible before you are asked to rotate to the next station.

Trainer Instructions:If you run short of time, you can cut this exercise, but participants will not be as likely to understand the ABCX model without this work. The concept of perceptions is not as obvious as stresses and supports. If participants don’t generate their own lists, they may not grasp that component of the model. You could also choose to generate a few examples from the large group.

INFORMATION AND DISCUSSION: Hill (1949), McCubbin & Patterson (1983) ABCX Models, Wikler’s (1986) work on times of stress in the family lifecycleTIME LIMIT: 15 minutes


Increased familiarity with the model currently dominating research on family adjustment and coping (ABCX)

Identification of the times of greatest stress for families

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Understanding of the cyclical or recurring nature of emotion for families

Identification of supports and viewpoints that can help families


Materials Needed: Powerpoint slides

1) Refer to the list the participants made of different perceptions. The ABCX model made more sense of what people knew from experience to be true--that some families get weaker and others get stronger. But what about the fact that the situation goes on and on for a family with a member with a disability? That stressors come and go? That things get better and then sometimes get worse? That all this happens over time?

2) Ask participants: Wikler's research found that times of transition are particularly stressful to families; When do you think these might be?

3) Think about how the models dominate your work (medical models, readiness models, etc.)

4) If you are short on time, focus just on the ABCX and Double ABCX models

Relevant Information:Before the 1980's, most of the research on families focused on risk. The emphasis was on factors that weakened families, different stressors that resulted in negative adjustment of families. You will find articles looking at divorce rates among families with children with disabilities; articles dealing with out-of-home placement, with depression among mothers, with abuse and neglect, etc. The instruments used in research included the Beck Depression Inventory, the Parenting Stress Index, the Questionnaire on Resources and Stress, etc. In the early 1980's, researchers such as the Turnbulls and colleagues at the Beach Center in Kansas, George Singer and Larry Irwin in Oregon, Carl Dunst in North Carolina began to ask a different question. What about the families that didn't fall apart? What about the families who reported that the experience of having a child with a disability was a positive experience? The families who indicated they had become stronger? The focus changed to the study of family resiliency. What are the factors that intervene as families live with the situation and interpret its meaning for themselves?

Looking for models that would explain positive adjustment, researchers rediscovered the work of Reuben Hill from the late 1940's. He had studied families where the stressful event was the separation of soldiers who had to fight in World War II from their wives and children. Why did some families adjust well and others badly? His model is known as the ABCX Model, where A is the stressor or stressful event, X is the outcome (or sometimes the crisis, when negative), and Band C are intervening variables. B is the supports available, either internally, such as knowledge or experience, or externally such as extended family or services. Refer to the lists participants have made of supports. C is a very

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interesting part of the model. It is the perception of the event or the meaning the family gives to the event or situation as they live with it. This adds an important cognitive component to the process. In other words, you have a stress on a family; the way they adjust is influenced both by the supports they have in place to deal with the situation and the way they interpret the situation. George Albee of the University of Vermont adds in the factor of social oppression, to his model of coping and adjustment, but in theusual interpretation of Hill's model, that would be included as a negative amount ofsupport under the B component. A variation to Hill's model was developed by McCubbin and Patterson that is known as the Double ABCX model. Basically this model included a feedback loop. The outcome of one situation feeds back into the next situation. If a family faced with repeated stressors has good supports and a positive interpretation, they build their sense of confidence in being able to handle new situations, and you get what McCubbin and Patterson called bonadaptation. Things tend to spiral upward, more and more positively. On the other hand, if you have inadequate supports and negative interpretation, things can spiral downward, into maladaptation. But what about the reality that things can be going well and you can be interpreting things positively, and then reality sends you a big whammy? Is there any pattern that can lead families to know when the "whammies" are going to hit? Is there any cycle for families? They are the logical times of starting school, changing from one level of school to another, leaving school and entering adulthood, etc. One of the problems with all these models, is that the person or child with challenges is often interpreted as the stressor, with the parents and other family members receiving the impact. Try looking at the stressor as the situation the family is experiencing, with the person or child with challenges as part of the family being stressed and responding positively or negatively. Remember that models are only frameworks to help us interpret the reality of our experience. They can evolve or change dramatically, and may or may not fit with cultural interpretations of experience. They shouldn't be viewed as the reality itself. We should be prepared to let go of one model and go with a new one as soon as it makes more sense to us. But services tend to be dominated by outdated models longer than the theory.

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If participants have a hard time knowing who “thinks like them,” it is alright to have random groupings; the differences will come out in the discussion.

EXERCISE: Independence, Dependence, Interdependence, Reciprocity TIME LIMIT: 30 minutes


Learn the meaning of the words - independence, dependence, interdependence, and reciprocity - related to your culture and other cultures

Examples that support these terms

Instructions:

1) Split into groups of people you believe may have similar interpretations of the words independence, dependence, interdependence, and reciprocity.

2) Discuss your reaction to these terms as it relates to your culture. How are these terms valued in your culture? Give examples.

3) Write all your responses on the flipchart and present as a group.

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DISCUSSION: Learned HelplessnessTIME LIMIT: 10 minutes


Awareness of things that strengthen and weaken the power of the individual and the family

Instructions:

As a group, discuss the following questions:

o What is learned helplessness? What causes it?o How is this different from dependency?o What does the presence of learned helplessness reveal about

the service system?


1) Ask participants for their definition of dependency. One definition might be the belief that you need the help of another person to do something; a lack of confidence in your ability to be effective on your own. Who defines dependency? What an outside person may define as “dependency” may be the support that makes life practical for a person with a disability.

2) Ask for examples of helping practices that build dependency in families.

What would a "helper" get out of building dependency in a family? What are the problems a "helper" would face in a situation where a person or family has become dependent?

3) Ask if anyone can define learned helplessness. Learned helplessness is a concept developed by Maier and Seligman (1976) in their study of learning in animals. A dog was given an electric shock that it could escape by jumping to a different part of the cage. It quickly learned to escape the current. Then the current was distributed, so that it didn't make any difference where the dog jumped--it had no effect. The electric shocks came at random. After

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Get at least three examples out of the group, taking notes on flipcharts. Encourage participants to think beyond the realm of disability issues to anything in their lives that they thought they couldn’t do, but actually accomplished.

several attempts the dog stopped trying to escape the current, and just "endured" passively. Under those conditions, dogs and other animals became depressed and developed psychosomatic disorders. Even when the original condition was restored, the dog didn't try to jump away, believing it wouldn't make any difference. In other words, the animal had learned to be helpless by losing hope in its ability to have an effect on the situation. When this term is used to apply to a family, it really is a terrible indictment of the "system" serving that family, rather than the family itself. What is being said is that the family has learned over time that nothing they do will have any effect in making the situation better for themselves or their child, and thus they have given up and just endure. This is different from dependency in that with dependency, at least something positive is happening. The family doesn't believe that they are making something happen, but there can be some feeling of hope through the action of others. With learned helplessness, the lack of effective action has led them to believe nothing can be done

INFORMATION & DISCUSSION: Rebuilding HopeTIME LIMIT: 30 minutes


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Build self-efficacy (belief in yourself to get things done) Learn the impact of self-efficacy on self-advocates and their families

Instructions:

1) Think about what self-efficacy means to you and discuss with others. 2) Give examples of a time when you thought that you could not do

something, but in the end you actually did it.3) How did you overcome that belief?

Trainer Instructions:1) Relate examples the participants come up with to following ideas of

Bandura:

Bandura found that self-efficacy perception could be built in four ways:1) actually trying something and experiencing at least some success2) watching someone else model successful action3) being encouraged by others4) by the physiological state a person is experiencing

1: The most effective of the strategies is the first. Getting even partial success builds a person's sense of ability, better than any amount of persuasion.

2: The second is effective to the extent that the person believes the "model" to be similar to him/herself. In other words, if a person who is very much like you can do it, you probably can too. According to this theory, this would be the reason for the success of mentor programs and peer support groups like Parent to Parent.

3: The third strategy, encouragement, is less effective, but still can be somewhat successful. It's the old "you can do it" leading to "I think I can, I think I can" Little Engine that Could strategy (mental rehearsal, visualization). Research by Taylor & Brown (1988, 1994) suggests that even the illusion of control can lead to more effective functioning.

4: The fourth way, interpretation of physiological sensation, can be illustrated by having people think about the state of intensity they might experience before an important speech or test or a big race. They could interpret that intensity as "being really psyched up and ready," or as being too nervous to perform. The physical sensations are the same; the interpretation is the key.

2) Ask participants: Under what conditions would perceived control cause a person more stress?

Bandura has suggested, 1) when decision-making is difficult or ambiguous; 2) when events are actually uncontrollable; 3) when it causes excessive feelings of responsibility, and 4) when control demands a high investment of time, energy, or risk. According to Bandura, groups can build their sense of efficacy by the same methods, building the belief that together they are capable of

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This is a competitive exercise! Coming toward the end of a long afternoon of exercises can slow participants down. Friendly competition under tight time limits lifts up the energy of the group.

achieving results, or also that individual members of the group are able to achieve results).

EXERCISE: Thinking about Empowering Practices TIME LIMIT: 10 minutes


Awareness of positive things self-advocates and families can do to get their needs understood and supported

Identification of positive practices to replace disempowering ones

Instructions:

1) In small groups, list as many practices as you can that disempower families

2) For each disempowering practice, counter with an empowering version to address the same issue or need.


1) Break up participants into approximately 5 groups and give them 5 minutes to come up with as many practices that disempower families as possible.

2) For each disempowering practice, ask participants to counter with an empowering version to address the same issue or need.

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3) Warn participants when they have 1 minute left. 4) Identify winners and reward with candy!

EXERCISE: Principles to Practice: Identifying IndicatorsTIME LIMIT: 40 minutes


Increased familiarity with principles of individual and family support Help translating principles into indicators of positive practice for

systems improvement Real-life examples to illustrate positive practice

Instructions:

1) Remain in your small groups2) As a group, draw two Oklahoma Individual and Family Support

Principles.3) Discuss how you would know if a support or service was following

that Principle. 4) Come up with as many indicators as you can and report to the

larger group.


Materials Needed: Principles to Practice Indicator booklet

1) If you have time, try to break the Indicators down into ones that relate to the provider and ones that relate to systems after several examples.

2) See if anyone has suggested an indicator that would relate to the person or family receiving support, suggesting that everyone has a responsibility for implementing principles.

3) What are some examples of responsibilities of the person receiving support?

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Make sure that you balance each disempowering practice with an empowering one; otherwise, this exercise becomes a very depressing attack on systems.

Leave as much room as possible between value cards, so that students have to really move around. Give this exercise as much time as it takes for the students to have fun with it. The larger the class, the fewer the levels you may have time to explore. Have fun with it!

4) At the end of the time, pass out copies of the Principles to Practice Indicators and Family Stories.

Part 2. Cultural Models, Advocacy and Leadership

EXERCISE: Family ValuesTIME LIMIT: 55 minutes


Identification and acceptance of your values and those of the people around you

Awareness of how your values influence your work with others

Instructions:1) The trainers will distribute a list of values. Arrange these in order of

importance for the family you grew up in, starting with #1 as the most important and going down to #10 as least important. Write these numbers down.

2) Arrange these values in order of importance for the family you are raising now (or for yourself if you don’t have children).

3) Cards with these words are placed around the room. Go and stand at your #1 choice for the family you grew up in. Look at the others who share your first choice. See what values were more important to others in the group. When trainers instruct you, go to your #2 and #3 choices.

4) Finally, go to the #1 choice for the family you are raising now, or for yourself. When instructed, go your #2 and #3 choices.


Materials Needed: Values sheets

1) Distribute values sheets with the following terms throughout the room:

tradition, ritualhierarchyequity; social justicereligionindependenceworkeducationmoneylove

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The changes that happen over time create differences among people who may have originated from the same culture. These changes can be generational, related to differing degrees of acculturation, or related to individual difference. Acknowledging these differences is important to offset stereotyping of cultures.

foodother (list)

2) Emphasize that these are all positive values and give participants 5 minutes to rank their values on the sheets of paper you distribute.

3) Place cards with the values on the floor, widely spaced. 4) Rotate to clusters when participants have completed ranking and

encourage participants to share why this value was particularly important in their family. (Note: People have the choice whether or not to share.)

5) Ask questions as you are moving around and afterwards, such as: Are you surprised to see some of these people on the same values

as yourself? On different ones? How different are your values from your parents'? Do you think your own children will have the same or different values?

6) If they have replicated their parents’ values very closely, alert them that they may consider these values to be “absolutes.” Alert them especially to areas where they have clearly taken opposing views to their parents’ values. These are "hot" values for them. They should be particularly careful not to project their own issues with these values into situations where they are working with families

Additional Discussion Questions:1) What are some of the things (factors) that influence

the formation of values? 2) How do values change over time? What causes

them to change? 3) If you are a parent, how do you think your children

would rank these values, both for you (as their family of origin) and for themselves? Take the questionnaire home and see how accurate you were in your predictions of their choices and how accurate they are in their identification of your values. If your children are willing, discuss with them how they formed their choices and where each of you was accurate or mistaken about the other.

Relevant Information:The purpose of this exercise is to raise the participants' awareness that each of us holds values we have assimilated from our families. Our experiences over time modify those values to a greater or lesser extent. None of these values is the norm. Others in the group will hold different values, and that is alright. The exercise attempts to establish that values are relative rather than absolute. The exercise also raises participants' awareness of their own value system, so that they can realize when it is interfering with their openness of mind in dealing with people with different values.

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The previous exercise feeds into this discussion on individual background.

PAIRED DISCUSSION: Cultural Identity TIME LIMIT: 30 minutes


Understanding of different cultural backgrounds in the group and how they influence those individuals


In pairs, discuss the following questions:

o What is the cultural/ethnic/linguistic origin of your parents?

o Your grandparents? o If each of your parents came from a different group, did

one have more influence than the other on your family experience?

o How do you identify yourself?

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o If you have chosen a life-partner, is this person from the same background as yourself? Is this important to you?

o If you have children, how have your cultural backgrounds influenced the ways you are raising them?


1) Invite participants to pair up with someone who was usually on different values in the last exercise.

2) Give about 15 minutes for discussion and about 15 minutes for large group sharing, making sure to get examples from the last questions

EXERCISE: How Language Shapes ValuesTIME LIMIT: 15 minutes

What you will get out of this exercise:

Understanding of disability-related words and how these words influence people

Ideas for language that is positive and respectful


As a group, examine the language in the following sentences, all of which were actually heard at one time or another. Discuss the impact of the language on attitudes and values. Improve the sentences, using words with different meanings.

o She suffers from multiple sclerosis. o They adopted two Down's kids.o "Mom" says we can't get the blood sample that way.o Though wheelchair-bound, John has been heroic in overcoming

obstacles.o Handicapped parking is to the left.o The number of welfare families is putting increasing pressure on state

budgets.o Gloria is not only non-compliant; she's a runner.o We give special consideration to the disabled.o Dysfunctional families like this have trouble producing normal children.

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This is a whole group exercise; have fun with it!

o Autistics often appear deaf and dumb.

Think about other "loaded" words and phrases you have heard. What is the worst example you can come up with?


Each of these sentences is real and has been heard by families. Some may seem a little obscure. #3 illustrates the very common labeling of every mother as "Mom." The problem with that is that it categorizes and dehumanizes rather than acknowledging that person as an individual, like Mrs. Jones or Sarah's mother. Most people working in schools and services aren't aware that some families react negatively to this. Many people with disabilities dislike the word “handicapped” (#5) because the origin of the word is said to have come from “cap in hand” or begging. Participants who don’t normally work with people with disabilities may not realize that the term “runner” in #7 isn’t referring to a person getting exercise; it refers to someone who tries to run away from the people supervising her activity. Get into the brainstorming and let the horror stories come out

Additional Discussion Question: If language is an aspect of culture, what does this exercise suggest about disability as a culture?

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EXERCISE: Folk Medicine – One example of culture in our livesTIME LIMIT: 30 minutes

What you will get out of this exercise:

Understanding of practices and beliefs for different cultural groups


1) In small groups, identify folk remedies that have come down from your families for the ailments listed below.

2) On flipchart paper record the ailment, the remedies, a guess at the culture the remedy came from, and your own personal judgment of whether or not the remedy works.

Ailment Remedy Culture Effectivenesscolicky baby hiccups warts cramps head cold cough high fever muscle aches impotence upset stomach

ALTERNATIVE EXERCISE: Child-Raising – Another example of culture in our lives

Practice Culture EffectivenessFeeding Sleeping Toilet training Response to a crying baby Discipline Perception of child's disability Perception of health and healing Role of the child in the family

Trainer Instructions:Relevant Information:Every culture has evolved health remedies from generations of practice, observation, and interpretation. What has remained over time are things that, in the belief of that culture, have worked. The same is true of other aspects of a culture, from family structure to politics to beliefs and practices

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If you have used the alternate version of the previous exercise, and are running short on time, you can eliminate this exercise, as it explores similar concepts.

around birth and death. To disagree with the practices and beliefs of a culture is to challenge the collective experience of generations whose care and love made possible the people of the present. In some cultures, to challenge the ways of the ancestors is the boldest form of disrespect, ingratitude and arrogance. In America, history is short, and old ways are not often revered. In other cultures, it is best to ask questions to understand how a practice has come about rather than to directly challenge it with new ways.

This was chosen as a non-threatening example of culture. Make sure to ask, "Do you think it works?" on the Effectiveness section of the flipchart. What we hope for is several different remedies on some, with each considered effective by the person who listed it. This is a lighthearted example of the pervasiveness of culture in our lives. The main point to reinforce is that cultures represent collective wisdom. After this exercise, ask, "Can you think of other areas of life where cultures have evolved practices that the people of that culture believe work?" Brainstorm briefly as a large group, but give enough time to get breadth into the brainstorming. This is the point to introduce the role of the cultural broker.

PAIRED DISCUSSION: Basic Cultural Assumptions Underlying Family SupportTIME LIMIT: 60 minutes


Awareness of child-raising practices from different family cultures Enhanced understanding and acceptance of different practices Practice interviewing skills Awareness of invasiveness versus information

gained in interview questions Ideas on how to modify an interview to fit the

comfort level of the person being interviewed


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1) Pair with someone who is as different from you as you can find (remember the values exercise--find someone who was consistently on different values from yourself, if possible).

2) Using Lynch's Guidelines for the home visitor, (materials below) interview each other for about 30 minutes each.

3) Practice good listening skills, and take notes.


1) Before participants begin the process, invite the group to share ideas and experience about interviewing families. Encourage flexibility.

2) When the interview is finished, ask what participants thought about the protocol. Do they think these questions would be useful with people from the same culture as the interviewer? Did people find the questions appropriate? What is "appropriate?" How would they decide if the questions are too intrusive to ask within certain cultures? Encourage sharing of opinions from different cultural groups within the participants.

This exercise is intended to give practice with interviewing as well as create cultural sensitivity. This may lead into a discussion of the purpose of an interview, which determines the amount of flexibility appropriate in each situation. The interviewer should think from the perspective of the service he or she may offer in real life--"If you were offering the services of your organization to this family, how would you custom tailor those services to fit the family culture?" This can also be influenced by the amount of flexibility that exists in supports.

GUIDELINES FOR THE HOME VISITOR—Lynch & Hanson

Part I--Family structure and child-rearing practices

Family structureFamily compositionWho are the members of the family system?Who are the key decision makers?Is decision making related to specific situations?Is decision making individual or group oriented?Do family members all live in the same household?What is the relationship of friends to the family system?What is the hierarchy within the family? Is status related to gender or age?Primary caregiver(s)Who is the primary caregiver?Who else participates in the care giving?What is the amount of care given by mother versus others?How much time does the infant spend away from the primary caregiver? Is there conflict between caregivers regarding appropriate practices?What ecological/environmental issues impinge upon general care giving (i.e., housing, jobs)?

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Child-rearing practicesFamily feeding practicesWhat are the family feeding practices?What are the mealtime rules?What types of foods are eaten?What are the beliefs regarding breastfeeding and weaning?What are the beliefs regarding bottle feeding?What are the family practices regarding transitioning to solid food?Which family members prepare food?Is food purchased or homemade?Are there any taboos related to food preparation or handling?Which family members feed the child?What is the configuration of the family mealtime?What are the family's views on independent feeding?Is there a discrepancy among family members regarding the beliefs and practices related to feeding an infant/toddler?

Family sleeping patternsDoes the infant sleep in the same room/bed as the parents?At what age is the infant moved away from close proximity to the mother?Is there an established bedtime?What is the family response to an infant when he or she awakes at night?What practices surround daytime napping?Family's response to disobedience and aggressionWhat are the parameters of acceptable child behavior?What form does the discipline take?Who metes out the disciplinary action?

Family's response to a crying infantTemporal qualities--How long before the caregiver picks up a crying infant?How does the caregiver calm an upset infant?

Part II--Family perceptions and attitudes

Family perception of child's disabilityAre there cultural or religious factors that would shape family perceptions?To what/where/whom does the family assign responsibility for their child's disability?How does the family view the role of fate in their lives?How does the family view their role in intervening with their child? Do they feel they can make a difference or do they consider it hopeless?

Family's perception of health and healingWhat is the family's approach to medical needs?Do they rely solely on Western medical services?Do they rely solely on holistic approaches?Do they utilize a combination of these approaches?Who is the primary medical provider or conveyer of medical information?Family members? Elders? Friends? Folk healers? Family doctor? Medical specialists?

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Do all members of the family agree on approaches to medical needs?

Family's perception of help-seeking and interventionFrom whom does the family seek help--family members or outside agencies/individuals?Does the family seek help directly or indirectly?What are the general feelings of the family when seeking assistance-- ashamed, angry, demand assistance as a right, view assistance as unnecessary?With what community systems does the family interact (educational/medical/social)?How are these interactions completed (face-to-face, telephone, letter)?Which family member interacts with other systems?Does that family member feel comfortable when interacting with other systems?

Part III--Language and communication styles

LanguageTo what degree:Is the home visitor proficient in the family's native language?Is the family proficient in English?If an interpreter is used:With which culture is the interpreter primarily affiliated?Is the interpreter familiar with the colloquialisms of the family members' country or region or origin?Is the family member comfortable with the interpreter? Would the family member feel more comfortable with an interpreter of the same sex?If written materials are used, are they in the family's native language?

Interaction stylesDoes the family communicate with each other in a direct or indirect style?Does the family tend to interact in a quiet manner or a loud manner?Do family members share feelings when discussing emotional issues?Does the family ask you direct questions?Does the family value a lengthy social time at each home visit unrelated to the services program goals?Is it important for the family to know about the home visitor's extended family? Is the home visitor comfortable sharing that information?

From Wayman, K.I., Lynch, E.W., & Hanson, M.J. (1990). Home-based early childhood services: Cultural sensitivity in a family systems approach. Topics in Early Childhood Special Education, 10, 65-66.

DISCUSSION: Exploring Cultural Reciprocity in Serving FamiliesTIME LIMIT: 45 minutes

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Definition of cultural reciprocity Development of your own cultural reciprocity

Participant Instructions:1) In small groups, assume that you are trying to help a family from a

culture different from the mainstream culture. Choose a culture you are familiar with or a group member with personal expertise. (If useful, draw on the previous exercise).

2) Analyze the example listed below and record notes on flipchart to share with the group.

Example:A girl in her late teens has given birth to a child; her child-raising practices are different, and child protection attributes this to lack of ability to care for her child, and is trying to make a case for termination of her parental rights. As you try to help her, consider the following questions. You need to help her to fulfill the expectations of child protection, unfamiliar as they may be for her.

o What are your interpretations of the family’s difficulties? What cultural values might be underneath your interpretations and recommendations? What are the cultural values in the position of child protection? Are these different from yours?

o Does the mother understand where child protection is coming from? Does she understand your position? How does she see her situation? Does she understand the power in the situation—that she could lose her child?

o Acknowledge and give explicit respect to any cultural differences identified, and fully explain the cultural basis of your assumptions (and those of child protection).

o How would you adjust your interpretations or recommendations to fit those of the family (at the same time that you help them fulfill the expectations of child protection)?


Relevant Information:This exercise forces participants to take the position of a cultural broker. Ask the group to define this role and describe what is involved in carrying out that role. As much as the support person may want to respect the practices of the family, she must realize that the mother will have to satisfy child protection that she can care for the child in ways that are compatible with mainstream practices. The support person’s job, then, is to explain mainstream practice to the mother, convincing her of the need to comply, at the same time that she tries to explain the cultural practices of the mother to child protection.

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DISCUSSION: Applying Cultural Adaptations to the Planning ProcessTIME LIMIT: 45 minutes


Understanding of different issues involved in planning for services and supports for self-advocates and families of different backgrounds

Awareness of how much services and supports are tied to the primary culture

Ways to bring two cultures together so that self-advocates and families are able to get what they need


1) Split into small groups representing cultural groups similar to you. 2) Using the list of cultural factors as a guide, come up with examples of

adaptations that may make planning more comfortable for families from other cultures.

Factors in Planning with Families

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o sense and importance of timeo amount of directness in communication

o space or physical distance o handling disagreemento eye contact o use of interpreterso timing, pacing o sense of fate vs. free willo numbers of people involved o languageo Who should be involved? o talkativeness or quietnesso What roles do they play? o maintaining appearances or "face"o patterns of courtesy and address o degree of formality


Materials Needed: Powerpoint slide on differences in families

You won't possibly finish this whole exercise--pick and choose. Draw information from the other participants especially where members have direct experience with different cultures. If a wealth of information exists, you may choose to extend the time for this exercise, even though it may leave you cutting subsequent lessons shorter. We don’t give nearly enough time to this module, and if your resources are strong, use them. If someone has direct experience with the deaf culture, this should be included. Make sure to ask about differences between urban and rural families, or other local variations, keeping the concept of “culture” as broad as possible. Alert participants that an exercise like this inevitably deals in overgeneralizations, and emphasize differences within cultures. Have the class identify factors which cause differences, such as age, education, economic status, length of time in this country, individual differences and other factors.

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EXERCISE: Cultural Attitudes toward DisabilityTIME LIMIT: 45 minutes


Understanding of different cultures’ views on disability Ways to change attitudes about disability


1) Divide into three small groups, and choose a person to take notes. 2) Draw "situation" from the hat. Discuss the following questions in

relation to your group's situation: Describe the underlying attitude in the situation. Where does this attitude come from? How is it formed? To what extent is this attitude "cultural"? How is this attitude in conflict with disability culture? How would you go about changing it? Do you have the right to try to change it?

3) Report your findings to whole group.


Materials Needed: Handout on cultural attitudes involving disability issues

1) Divide class by counting to four. Hand out flipchart paper and markers.

2) Either cut up the situations and let them draw a situation, or just assign a number to each group.

3) Ask participants to define "culture" broadly. Every organization, every group has common patterns of thinking about the world. They are not necessarily looking for ethnic attitudes, but rather the "culture" of the communities where these situations have occurred. How is “disability culture” in conflict with the dominant culture in the situation?

4) Give them no more than 30 minutes for small group discussion and ask them to read their situation to the whole class before they report their analysis. On question 6, encourage participants to see the underlying

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philosophical issue of whether they believe values are relative or absolute. If they believe they are relative, is one value "better" than another?

Training Conclusion:Conclude the training by administering the Family Empowerment Scale the second time, and by collecting evaluations of the training. Remind participants that if they choose, they can put their names on the FES, so that individual change can be measured. If they do not choose to use their names, we can still look at aggregate change.

Use some form of closure activity. My favorite is the one we used, with each participant throwing yarn to another participant while thanking them for something related to the training. Each holds on to the yarn, so that the group is connected in a web. Cut the yarn apart with scissors, with each person taking a piece of the web.

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MOTHER

FATHER

PATERNAL GRANDFATHER

OLDER BROTHER

MATERNAL GRANDMOTHER

PARENT'S SIGNIFICANT OTHER

MATERNAL UNCLE

OLDER SISTER

YOUNGER BROTHER

AUNT (FATHER’S SISTER)

Other approaches to planning can include child-centered planning; person-centered planning, and service or system-centered planning.

Card 1

Stephen is 7 years old and has autism. He doesn't talk, and is tactile defensive, (he doesn't like being touched on any part of his body, especially around the head, unless he invites it himself). Stephen lives in Huntington, VT, a rural town about 25 miles from the larger population center of Burlington.

What will be done:Auditory integration training, twice a day for 10 days, to be carried out in Shelburne, VT, approximately 20 miles from his home.Adaptive swim/gym program every Monday night for 8 weeks, from 6:30 - 7:30 p.m., at St. Michael's College, approximately 25 miles from home. Someone must be available to change him in the men's dressing room, before and after classes.Toothbrushing program, morning and night, as his teeth are showing signs of plaque and decay, and he can only have dental work under general anesthesia.

Card 2

Theresa is a 10-year old girl with "a severe reputation." She gets angry easily and often misinterprets things other people say and do. When that happens, she frightens people by doing dangerous things like running out into the middle of the road or climbing up on the roof.

What will be done:A team will meet at school every Thursday at 11 a.m. to discuss ways to help Theresa succeed.Theresa will have counseling twice a week after school in the neighboring town (about 15 miles away) at the regional mental health center.The family will have 3 hours of respite a week, with the worker recruited and trained by the mental health center.

Card 3

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Jaime is 11 months old. He was very premature and is dependent on technology.He has only been out of the hospital for 3 months now, and his family wants him to be able to continue living at home. The family makes its living with a small dairy farm.

What will be done:Jaime has a "high-tech" waiver (Medicaid funding for services), providing for a nurse to care for him at home for 12 hours out of every 24 (if the family can find one available to work).Jaime has to be on oxygen all the time. The cylinders are highly explosive, and a month's supply is delivered at once and must be stored.Jaime needs to be suctioned regularly, and fed by a gastric tube. He has grand mal seizures that are only controlled part of the time, and he has sleep apnea (he sometimes forgets to breathe when he is asleep).

Card 4

Daniel, who has Down Syndrome, is 45 years old, born when his mother was 30. He has always lived at home. He is extremely attached to his family, and will often refuse to eat or drink unless they are with him. Daniel’s speech is very hard to understand. He lives in town and relies on the bus, but must have someone go with him.

What will be done:Daniel will be evaluated for an augmentative communication device (speech synthesizer).Daniel will be introduced to Facilitated Communication to see if it will help him communicate.Daniel will spend weekends at a respite home, to get him used to sleeping in another place.Daniel will begin work at the Ben & Jerry’s shop downtown, cleaning tables in the customer area.

Cases--Cultural Attitudes involving disability issues

1. At the Balloon Festival a few years ago, a young woman with cerebral palsy was not allowed to ride in a balloon. The Human Rights Commission ruled she had experienced discrimination.

2. At a Developmental Services annual conference, the keynote speaker was a leading prevention psychologist. The audience included state people, providers, families and self-advocates. The speaker advocated for amniocentesis and abortion of fetuses with identifiable conditions

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like Down Syndrome. People in the audience were outraged.

3. At an IEP meeting for a girl with behavioral problems, a psychologist reported that the children in the family had different fathers. A special educator referred to the mother as a "multi-partner parent."

4. In the current tight labor market, it has been very hard to hire and keep good direct support workers. Service coordinators, families and individuals can spend weeks recruiting, interviewing and training people. A mother has turned down several qualified workers, saying, “I don’t want gays or lesbians working with my son.”

(Note: Situation #3 is the same family we met in the family-centered planning exercise. This is the mother of Theresa, the one who came every week to the school for team meetings. In the real situation, the mother freely admitted to me that she had difficulty choosing good men. She hadn’t married them, because she realized they weren’t stable role models for her children. Earlier the morning of the meeting, she had shared with me that she had finally decided to marry her current partner, but had just found out he was cheating on her. Then she heard herself described in the meeting as a “multi-partner parent” and went home and attempted to commit suicide. Fortunately, she was not successful.)

Please fill out the following information. Your results will not be connected to your name. Your name is only used to combine before and after training scores.

Name: ___________________________________________ Date: ___________________________Evaluation Taken: (circle one) Before Training After Training

Family Empowerment Scale (Families)

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DIRECTIONS:

On the next three pages, there are a number of statements that describe how a parent, caregiver, or other family member of an individual with a disability may feel about his or her situation. For each statement, mark an X in the column that best describes you.

For example:StronglyAgree

Agree Neutral Disagree

Strongly

Disagree

1. I have enjoyed this training. X

ABOUT YOUR FAMILY StronglyAgree


Strongly

Disagree

1. When problems arise with my child, I handle them pretty well.

2. I feel confident in my ability to help my child grow and develop.

3. I know what to do when problems arise with my child.

4. I feel my family life is under control.

5. I am able to get information to help me better understand my child.

6. I believe I can solve problems with my child when they happen.

7. When I need help with problems in my family, I am able to ask for help from others.

8. I make efforts to learn new ways to help my child grow and develop.

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9. When dealing with my child, I focus on the good things as well as the problems.

10. When faced with a problem involving my child, I decide what to do and when to do it.

11. I have a good understanding of my child’s disability.

12. I feel I am a good parent.

ABOUT YOUR CHILD’S SERVICES StronglyAgree


Strongly

Disagree

13. I feel that I have a right to approve all services my child receives.

14. I know the steps to take when I am concerned my child is receiving poor services.

15. I make sure that professionals understand my opinions about what services my child needs.

16. I am able to make good decisions about what services my child needs.

17. I am able to work with agencies and professionals are providing services to my child.

18. I make sure I stay in regular contact with professionals who are providing services to my child.

19. My opinion is just as important as professionals’ opinions in deciding what services my child needs.

20. I tell professionals what I think about services being provided to my child.

21. I know what services my child needs.

22. When necessary, I take the initiative in looking

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for services for my child and family.

23. I have a good understanding of the service system that my child is involved in.

24. Professionals should ask me what services I want for my child.

ABOUT YOUR INVOLVEMENT IN THE COMMUNITY

StronglyAgree


Strongly

Disagree

25. I feel I can have a part in improving services for children in my community.

26. I get in touch with my legislators when important bills or issues concerning children are pending.

27. I understand how the service system for children is organized.

28. I have ideas about the ideal service system for children.

29. I help other families get the services they need.

30. I believe that other parents and I can have an influence on services for children.

31. I tell people in agencies and government how services for children can be improved.

32. I know how to get agency administrators or legislators to listen to me.

33. I know what the rights of parents and children are under the special education laws.

34. I feel that my knowledge and experience as a parent can be used to improve services for children and families.

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Please fill out the following information. Your results will not be connected to your name. Your name is only used to combine before and after training scores.

Name: ___________________________________________ Date: ___________________________Evaluation Taken: (circle one) Before Training After Training

DIRECTIONS:

On the next three pages, there are a number of statements that describe how an individual with a disability may feel about his or her situation. For each statement, mark an X in the column that best describes you.

For example:StronglyAgree


Strongly

Disagree

1. I have enjoyed this training. X

Advocate Empowerment Scale

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60

ABOUT YOU StronglyAgree


Strongly

Disagree

1. When problems related to my disability arise, I handle them pretty well.

2. I feel confident in my ability to grow and learn.

3. I know what to do when problems related to my disability arise.

4. I think I can control things in my life.

5. I am able to get information to help me better understand my disability.

6. I believe I can solve problems related to my disability when they happen.

7. When I need help with problems related to my disability, I am able to ask for help from others.

8. I make efforts to learn new ways to grow and develop.

9. When handling my disability, I focus on good things as well as problems.

10. When faced with a problem related to my disability, I decide what to do and when to do it.

11. I have a good understanding of my disability.

12. I feel I am a good advocate.

ABOUT YOUR SERVICES StronglyAgree


Strongly

Disagree

35. I feel that I have a right to approve all services that I receive.

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36. I know the steps to take when I am concerned I am not receiving good services.

37. I make sure that professionals understand my opinions about what services I need.

38. I am able to make good decisions about what services I need.

39. I am able to work with agencies and professionals that provide my services.

40. I make sure I stay in regular contact with professionals who are providing my services.

41. My opinion is just as important as professionals’ opinions in deciding what services I need.

42. I tell professionals what I think about services I am provided.

43. I know what services I need.

44. When necessary, I take the initiative in looking for services for myself.

45. I have a good understanding of the service system I am involved in.

46. Professionals should ask me what services I want.

ABOUT YOUR INVOLVEMENT IN THE COMMUNITY

StronglyAgree


Strongly

Disagree

47. I feel I can have a part in improving services for individuals with disabilities in my community.

48. I get in touch with my legislators when important bills or issues concerning people with disabilities are pending.

49. I understand how the service system is

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organized for people with disabilities.

50. I have ideas about the ideal service system for people with disabilities.

51. I help other individuals with disabilities and their families get the services they need.

52. I believe that other individuals with disabilities I can have an influence on services for people with disabilities.

53. I tell people in agencies and government how services for people with disabilities can be improved.

54. I know how to get agency administrators or legislators to listen to me.

55. I know what the rights of individuals with disabilities and their families are under the special education laws.

56.I feel that my knowledge and experience as an advocate can be used to improve services for other individuals with disabilities and their families.

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Documents

Welcome - Genetic Alliancegeneticalliance.org/sites/default/files/advocacyatlas/tash_trainin… · Web viewLearned helplessness is a concept developed by Maier and Seligman (1976)