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The Role of Families During Transition Planning
Family Systems Perspective During Transition
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The Family as a Mobile In a mobile, all the pieces, no matter what the size or shape, can be grouped together and balanced by shortening or lengthening the strings attached, or rearranging the distance between pieces. So it is with a family. None of the family members is identical to any other; they are all different and at different levels of growth. As in a mobile, you can’t arrange one without thinking of the other. From: Viginia.Satir, (1972). Peoplemaking. Palo Alto, CA: Science and Behavior Books. Summary: While simply understanding the child does not mean that you will understand the family, understanding the family is necessary to understanding the child. (Turnbull & Turnbull, 2001, p. 109) The role of the family is important to transition because families often provide essential support to students as they move into adult life. For example, families may offer information and insights about the student during transition planning which practitioners may not readily have available. The family knows first-hand the student's likes, dislikes, hobbies and interests as well as whether he or she has ever kept a checkbook or gone out on a date. In addition, the family will remain an important part of the young adult's life well after school has ended. If the student is unable to find a job or if the job will not completely support the student's needs, the family typically makes up the difference with such things as financial support or a place to live, (Wehmeyer, Morningstar, & Husted, 1999).
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Family Systems Framework
INPUTS Family Characteristics Description of the family Personal characteristics Special challenges Family Life Cycle Stages and Transitions Changes in Characteristics Changes in Functions Changes in Life Roles Cohesion Adaptability In this session, we will look at the Family Systems Framework. The Framework will help you look in-depth at a family system and see how the actions and characteristics of each member affect the family as a whole. The Family Systems Framework allows us to think about the family as a whole, but also as a group of individuals who impact each other. Professionals who consider the family systems perspective will answer the question: “Who do we provide services to?” differently. Ann and Rud Turnbull, Co-Directors of the Beach Center on Families and Disability, and their colleagues developed a family systems framework which focuses specifically on families who have children with disabilities (Turnbull & Turnbull, 2001). There are four major elements to their family systems framework. 1. Family characteristics - are ways of describing the basic make up of the family. Three dimensions of family characteristics are: 1) characteristics of the family, 2) personal characteristics of family members, and 3) special challenges facing a family. 2. Family Interactions - Family interactions describe how family members interact with each other both as individuals and as subgroups within the family (extended family, marital, sibling, parent-child). Family interactions can be described by the cohesion and adaptability of family members 3. Family life cycle - is the sequence of stages of growth and change taking place over the life of the family. These transitions include both developmental as well as unexpected changes. 4. Family Functions - Family functions describe the tasks that families need to perform in order to meet the needs of family members, and of the family as a whole. This is how families as a system strive to maintain balance. Extended Family Marital Family Interaction PROCESS Siblings Parent-child Family Functions Affection, Self-esteem, Economics, Daily care, Socialization, Recreation, Education, Spiritual OUTPUTS Adapted from: Turnbull, A.P. & Turnbull, H.R. (2001). Families, professionals, and exceptionality: Collaborating for empowerment (4th Ed.). Upper Saddle River, NJ: Merrill Prentice-Hall.
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Family Characteristics: What is Your Definition of a Family?
Q: What is your Definition of a family? How we work with families may depend upon the lense through which we view the world = do you hold the stereotypical view of the nuclear family or is your definition different? Family characteristics are basic ways of describing a family. You can describe the characteristics of a family along three dimensions: 3 Dimensions of Family Characteristics Descriptors of the family Personal Characteristics of members Special Challenges Changing Characteristics of Families Changing Composition Changing Employment Patterns Greater Ethnic and Cultural Diversity 1. Discriptors of the Family- are size, composition, cultural and ethnic identities, socioeconomic status, and geographic location. These basic characteristics can be potential resources or limitations and can affect how a family copes with transition. Changing Characteristics of Families ( Use the “Enhancement Activity Information Sheet #1 (EA1) Changing families” for additional information to refer to) a. Changing Composition of Families - 50% Caucasian children & 80% of African-American children born after 1980 will live in single-parent homes - 37% of high school students with disabilities live in single parent homes as contrasted with 30% of their non-disabled peers b. Changing Employment Patterns of Families - 60% of all married women with children younger than 6 years old are working - Income gap between less-skilled and more-skilled jobs - Poverty rate of families headed by a single, female householder is almost 40% when a child in the family has a disability c. Greater Ethnic and Cultural Diversity - 1/3 of the population will be people of color by the year 2010 (Harry & Kalyanpur, 1994). - Students with disabilities from diverse backgrounds more at risk for SPED - Special education's emphasis on independence and individual achievement; some argue that SPED itself is based upon the European Protestant culture and therefore creates inherent conflicts among families from diverse backgrounds. 2. Personal Characteristics of Family Members describe a family member's physical health, mental health, and coping styles. These characteristics can influence the parents relationship with the child, as well as with the transition professional. a.. Exceptionality/disability – more related to the specific needs of the child and the demands placed on the family & how the family responds to these demands than to any label. Professionals need to keep in mind the family priorities regarding their needs and keep in mind that these needs will change over time – also, focus on the contributions and strengths of the child, not just the deficits. b. Health of family members – what are the needs of other family members? Is it transition planning? Which member is taking priority at the present time? c. Coping styles – long term planning is not how most people cope; how resilient are the families? Understanding how families cope with stress associated with transition will assist professionals in providing effective support How do families cope during transition?: Number one was informal support – turn to family & friends for information, support, role models – this is also what students in KS said about who they turn to for assistance during transition – it is not professionals!! turning to professionals was equal to the use of alcohol, cigarettes, TV (8.8%) 3. Special Challenges include poverty, drug and alcohol abuse, exposure to violence. These issues are complex and cause extreme stress. Families struggling with special challenges may find planning for their child's future very difficult. Extreme stress of multiple challenges w/in families can create chaos – families struggling with day to day challenges of feeding their children & keeping the electricity on, domestic violence, drug abuse, may be incapable of planning for the future for their teenagers – professionals will need to connect these families w/ more than just school-based or student-focused services; professionals need to consider how to support the whole family (like in early intervention)
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Changing Characteristics of Families: What does it mean for us?
What are our current expectations for families to be engaged in transition? Can we expect single-parent families working full-time to be equal partners in transition? Do we need to rethink meetings? Does the changing composition of families impact our assumptions about postschool outcomes? Summary: In a family systems perspective, family characteristics can impact other areas of the family system. For example, how family members interact with each other will differ depending on an individual's values, abilities, and viewpoints, as well as those of the family as a whole. Family characteristics often reveal potential resources for supporting the transition to adulthood. Discussion: Defining Family Characteristics and Implications for Transition (Handout #1) Now let’s take a moment and think about how family characteristics impact families and youth with disabilities during transition and self-determination. Look at the different scenarios for each of the major dimensions of family characteristics. Have the group respond to the questions and dilemmas presented in this handout. Activity: Read one of the 3 Case Examples and complete the first part of the Family Systems Framework as a Group (approx minutes) Have each small group read one of the three family vignettes and the Meet Donny story. Each of the small groups will then fill in the first part of the Family Systems Framework Form – the Family Characteristics section – for their family. Have each of the 3 groups report back to the large group the results of their activity.
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Family Interactions Adaptability Cohesion
Cohesion = boundaries of family members Adaptability = how well the family copes under stress. Family interactions describe how family members interact with each other both as individuals and as subsystems within the family. Four subsystems found in a family include: parental, sibling, extended family, and marital/partner. Family members play different roles depending upon within which of the four subsystems they are interacting. Cohesion – the closeness or distance between and among the family members within the system. Adaptability – The family’s ability to cope. These interactions determine how a family is able to handle special challenges and how the family is able to use available resources in positive and healthy ways. How the family interacts and perform certain roles both individually and w/ small subgroups w/in the family will determine how the manage and deal with any special challenges and use their resources to their benefits = how the family functions. Why is this Important? During transition, professionals need to know how the different members interact and the differing roles they play. Let’s look specifically at the Role of siblings within Transition (next slide) Extended Family Marital Siblings Parent-child
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Role of Siblings in Transition
Provide first experiences in peer relationships Support inclusion in neighborhood, school, & community Adult siblings often take increasing role in care or coordination of services Role siblings will take often depends upon family expectations & relationships Advantageous for transition professionals to have a sense of sibling relationships & support involvement as desired by family The role of siblings during transition (Use the Enhancement Activity #2: [EA#2: Role of Siblings] for additional information to refer to) Siblings often provide the very first experiences in peer relationships for a child with disabilities: - Siblings often play a critical role in supporting their brother or sister w/ disabilities in being included in school, neighborhood and community – they often have the best ideas/understanding of true inclusion - Adult siblings are often considered by the parents to be the one to take over responsibility later on. - How involved siblings will be depends upon many family factors and expectations, but if their role over time is one that will become more active, we need to encourage and support their involvement during transition Q: How prepared or involved are siblings during transition? How can we increase this involvement? Have the group respond to these questions. Allow time for discussion of this issue. Summary: Remember from the systems perspective, the major elements within the system impact one another. So, family characteristics affect family interactions. As family members perform certain roles and as members interact with each other, the dimensions of the descriptions of the family as a whole, individual member characteristics and special challenges have an influence. These interactions, in turn, affect how families are able to function and cope with challenges and opportunities that come their way. Activity: Have each small group read their family vignette and fill in the second part of the Family Systems Framework Form – the Family Interactions section – for their family. Have each of the 3 groups report back to the large group the results of their activity.
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Thought Questions about Siblings….
What is the potential role of siblings in the families you work with? In which situations would it be positive? Which ones would be negative? Do you think it is appropriate to have brothers and sisters (younger and older) involved in educational planning and implementation? At what age? What strategies might enhance positive interactions and involvement of siblings in transition planning?
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Family Functions Economic Daily care Recreation Socialization
Self-esteem Affection Education Spiritual functions Family functions are the tasks that families perform to meet the needs of each family member, and the family as a whole. Families strive to reach equilibrium through fulfillment of family functions. 7 Primary functions of the family are: 1. economic - generating income and handling family finances, paying bills, earning allowances, etc. 2. daily care - purchasing food, preparing meals, cleaning the home, providing transportation 3. recreation - vacations and travel, hobbies or clubs, sports 4. socialization - developing individual and collective friendships and social skills, and engaging in social activities 5. self-esteem - self-identify and self-image, awareness of personal strengths and weaknesses, motivation, empowerment 6. affection - developing intimate personal relationships, expressing one’s sexuality, giving and receiving nurture and love, and expressing emotions 7. education - participation in school-related activities, continuing education, homework, career development, work ethic, and transition. 8. spiritual - transmitting cultural and personal beliefs from one generation to the next, participating in a spiritual community While each family function is distinct, a family may not be able to cope with all of them at the same time. For example, if a family is struggling to meet the basic necessities of daily care, then functions such as recreation, socialization and even education may take a backseat. Also, a family may choose to devote less time to certain functions (e.g., a clean and orderly house) in order to give more time to others (e.g., time to recreate and socialize). It is important for us as transition professionals to strike a balance between our professional expectations and family functions. We often only focus on the education/vocational function of families and primarily from the perspective of the student role without considering the roles that other families are playing and how their time is balanced. It may be that this function (education/vocational) is not a top priority for the family and therefore they will struggle with our efforts to bring it to the front burner for them. We need to be aware of placing undue pressure on families regarding transition planning before they are ready – while understanding that families who plan sooner do better Activity: Have each small group read their family vignette and fill in the third part of the Family Systems Framework Form – the Family Functions section – for their family. Have each of the 3 groups report back to the large group the results of their activity.
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Family Life Cycle Developmental Unexpected
The family life cycle describes the stages of growth and change that take place over the life of the family. These stages of change can be: 1. Developmental - a new couple setting up a home, a baby being born, caring for children as they grow up and then move out of the home, grandchildren, retirement, and finally death 2. Non-Developmental and Unexpected - moving to a different town, a spouse losing a job, a sudden death of the breadwinner in a family, divorce Transition relates directly to this 4th element in the family systems orientation. Understanding the life cycle is helpful in that it provides picture of how the family changes over time – but based on the notion that change takes place in a predictable sequence over time. Certain life events mark the stages, changing roles, responsibilities, and needs of individual family members and these all have an impact upon the family as a whole. Keep in mind that it may not be accurate picture for families of children with disabilities who do not experience the same life stages as other children. They do not always experience the cues that lead to shifting responsibilities from parents to young adult & so they cannot always rely on this natural process and must instead deliberately plan for their child’s movement to adulthood Also, keep in mind that the transition between life stages is not neat and clear-cut for any family, regardless of whether there is a child with a disability in the family. One transition barrier: IDEA’s artificial age construct that determines when transition begins, this may not lend itself to how the family operates. Also, it does not consider the well-being of the family and almost exclusively focuses on the placement and needs of the student. Families may have different expectations and needs depending upon what life stage they are in: - From the Early Intervention research we know that: younger families want information & older families want positive relationships w/ professionals to meet the general well-being of the entire family – Q: Do these same issues apply to families in transition? What about the practices of family-centered planning in which the outcomes for both the student and family are considered and the family decides which ones will be the priority? Summary While many life cycle changes can be anticipated, this is not always the case for families and young adults with disabilities going through the transition to adulthood. For these families, the typical markers of change may not be present (e.g., driving, voting, having an after-school job), thus making change more difficult to anticipate and achieve. Also, keep in mind that from the family systems perspective, each of the four elements interact with one another similar to the elements in a mobile. Changes to roles, responsibilities, or interactions of one family member do often impact the rest of the family. Let’s look specifically at the issues surround the Emergent Adult Role of the student with disabilities (next slide). Unexpected
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Emergent Adult Role Assumptions in society
What is reality for families with adolescents with disabilities? Stressor for families: uncertain of status & capabilities of adolescent with disabilities Typical experiences for teenagers often missed with adolescent with disabilities Cultural issues: adulthood independence Obstacles families face in self-determination Strategies for supporting self-determination 1. The changing role of the individual with disabilities from child to adult (Use the Enhancement Activity #3 [EA#3-Emerging Adult Role] for additional information to refer to). - What are society’s expectations about adolescence and adulthood? – it is a time when society expects adolescents to take on more responsibility and autonomy. Yet increased independence may not be the case for families of young adults with disabilities - Are students with disabilities typically involved in the major life roles that prepare them for adulthood? (e.g, driving a car, having an afterschool job, checking account) - What roles do parents find themselves in during transition when there are no services available, no one to support them? this is often a time of more intense support and involvement of families… Transition Obstacles families face: -lack of clear reference points - uncertainty of strategies - concern about risk-taking - other challenges facing the family Q: Do we need to redefine adulthood away from independence and toward interdependence? What would the critical elements of this definition be? Research indicates that students want to continue their close relationships w/ families for both emotional and concrete support Adulthood might be thought of as the changing roles of individuals within the family setting What about Self-determination? The focus of most of the research has been on student support for SD; but families can play a critical role – most often the curriculum seem to focus on getting families more information about SD so they can support it, but families report that barriers to self-determination include: - Uncertainty about how much SD they can expect - uncertainty about the strategies for encouraging SD (usually informal methods of helping their children to make good decisions) - Concern about taking risks that will result in harm - Multiple challenges that prevent them from promoting SD We need to do a better job of combining family-centered approaches to transition planning (as has been done w/in early intervention) w/in the context of SD Strategies for supporting self-determination and transition - stronger focus on family-centered & culturally appropriate definitions for SD - opportunities for students to express themselves and preferences; self-assessments Activity: Have each small group read their family vignette and fill in the fourth part of the Family Systems Framework Form – the Family Life Cycle section – for their family. Have each of the 3 groups report back to the large group the results of their activity.
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Thought Questions… Emergent Adult Roles for a Student you know….
How has this student participated in any emergent adult roles? How do you think the student’s family feel about promoting self-determination or more adult roles? Are there strategies you can think of to assist the student’s family in overcoming obstacles to supporting adult roles? Is it possible to promote self-determination within family-centered and culturally appropriate ways?
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Family Issues… … and Dilemmas Professional perceptions of families
Even though there is a clear mandate in IDEA to involve families in educational planning, families often remain passive participants in transition planning. Yet, parent involvement is one of the few variables that is empirically linked to attainment of transition outcomes So, why the discrepancies? Some of the reasons related to issues during transition for families and dilemmas they face. Professional perceptions of families Past negative experiences Limited and conflicting experiences Lack of opportunities Lack of knowledge, authority, power Stress during transition … and Dilemmas Independence vs. Avoiding risk Less involvement vs. More involvement Stability vs. Disruptions Doing for vs. Teaching Maximize potential vs. Accept as is 1. Professional Perceptions of Family Involvement a. Uninvolved families - give professionals free hand, don't come to meetings, don't return permission slips, etc. Why do you think this is the case with these families? Think about their actions from the Family Systems Framework. Are their aspects of the Framework that might explain their actions?? b. Overly-involved families - we call them the difficult families (Mothers from Hell) Why? what could we do to work with families?? Is it our defensiveness or theirs?? 2. Past Negative Experiences - parents don't trust professionals - professionals don't support families - turning to professionals was equal to the use of alcohol, cigarettes, TV (8.8%) (Number one was informal support -- family, friends) GET REFERENCE FOR THIS - teachers as inhibitors to transition - not responsive to parental ideas or concerns; teachers moving too slowly on programmatic decisions or placements (Hanely-Maxwell article:) 3. Limited and conflicting Expectations - based upon past experiences, lack of opportunities, misinformation - learned helplessness (families come to expect that professionals will do everything) - family isolation – Why do you think families are isolated at the secondary level? (lack of support for families, other reasons??) - limited exposure to change - "service jetlag" - leads to low expectations for their son/daughter w/ dis. - Hanley-Maxwell - parents viewed programmatic content as critical but were confused about what exactly is good programs 4. Lack of Opportunity - when planning is done – not at good times for families to be involved - not involved in career development process – importance of this from the research - misinformed/uninformed – not enough information provided or only once – research shows families need to hear it again and again, until they are ready for the information (think about what we know about families from a systems perspective!) 5. Stress During Transition - entitlement vs. eligibility - will someone have to quit their job? - Jessica need to be tube-fed but agency wouldn’t do it. The mother had to come over during lunch to feed her - who really plans for their future?? Planning can create STRESS but also alleviate it. - adult status of the student with disabilities
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Why Should Families Be Involved?
For Students in General: Higher achievement Positive attitudes and behavior Higher graduation rates Greater enrollment in postsecondary ed Students with Disabilities: Quality transition plans Higher rates of postschool outcomes Student preferences
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Increasing Parent-Professional Collaboration
How does my school actively seek and/or provide opportunities for family involvement? Are my families involved in the transition planning? If not, how can we make this a positive experience for them? What strategies do we use to actively solicit feedback, ideas, comments, and concerns from families and students? How do we communicate with families? What information and skills do parents need to be full partners in transition?
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Strategies to Support Families in Transition
Encourage Early Expectations Help Parents to Recognize the Importance of their Contributions Support Parents to Honor Choices of their Child Increase Role of Social Support Network Address Parent Concerns Regarding Future 1. Encourage Early Expectations - Share transition outcomes early in child's life –these means working with early intervention and elementary school programs - Understand the importance of family influence on career development – family values, expectations, etc. often have a significant impact on their children’s choices. Invite and encourage families to become involved in career development activities at school. - Help families to developing great expectations: how can professionals help families to do this?? - Brotherson's findings about Self-determination for children 2. Help Parents to Recognize the Importance of their Contributions What can you do to resolve some of the barriers to parental involvement in transition IEP's - past neg. experiences - few opportunities to participate and the ones available are rigid - intimidation by experts - not perceived as equal contributors - other stressors in the family's life Understand family roles and the family systems dynamics taking place during this time Develop specific ways families can be involved: - provide information at transition meeting - provide input to the team - advocate for a plan - request information from families 3. Support Parents to Honor Choices of their Child - choices = independence -- is this right for everyone we work with?? What else can we do?? - The right to fail - issue: lack of choices in school setting - Self-determination skills – How do we support families? 4. Increase Role of Social Support Network - Importance of the social support network for finding jobs. Student with large support networks are more likely to find jobs. As a vocational coordinator, encourage the involvement of the family and their network to finding vocational experiences for the student - Provide information about transition and the student. to other members of the social support network. This might include siblings and extended family members. 5. Address Parent Concerns Regarding the Future - Why limit it to employment when families priorities (according to Hanley-Maxwell are: safe, happy residential; social networks; filling child's free time?) - Hanley-Maxwell - parents said too much emphasis on jobs, they wanted contributions for their children - strategies for job loss Activity: Reconciling Self-Determination within a Family Systems Framework Have pairs or triads of students complete the form. If time is short, you can have each group complete the “Family Systems Orientation” and “Reconciling Strategies” for just one of the Self-determination concepts. Have each group report back to the whole upon completion of the form.
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Why Focus on Culturally Diverse Families?
Participation is lower due to: unfamiliarity with US practices, different perspectives level of involvement need, cultural unresponsiveness of the system (Al-Hassan & Gardner, 2002) Professionals operating under assumptions inherent in special education and practice. (Rao, 2001) Insensitivity toward the family’s culture – during transition, this is particularly true – parents report transition services are unresponsiveness and even hurtful (deFur, et al., 2001). Culturally diverse families are less involved in school-based activities; passive participation may in fact lead to poor postschool outcomes (Greene et al., 2003)
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Cultural Base for Special Education
Definition of Disability Knowledge & Expertise Goal Setting SPED Parenting Communication
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Continua of Cultural Beliefs
Are there cultural characteristics that are similar across the three families? Do you have a cultural “cluster” more similar to one of the families? What implications does this have for the quality of your interactions with each family? Do you think having a comfortable and trusting relationship with your focus family would have an impact on working with Donny in accomplishing transition outcomes? Can you think of “probes” for more information you would need to gather from the family to have a more complete cultural understanding of their priorities?
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Steps to Cultural Reciprocity
Kalyanpur & Harry 1999 Step 1: Identify the cultural values embedded in the professional interpretation of a student's disability and special services Step 2: Find out whether the family recognizes and values these assumptions, and if not, how their view differs from yours Step 3: Acknowledge and give explicit respect to any cultural differences and fully explain the cultural basis of the professional assumption Step 4: Through discussion and collaboration, set about determining the most effective way of adapting professional interpretation and services to the family's value system Know Your Own World View Learn about the Families & Their Communities Acknowledge & Respect Cultural Differences Reach Mutual Goals
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Strategies to Enhance Transition & Cultural Competence
Outcomes = self-esteem, interdependence, inclusion Familism = consider other family members Culturally responsive transition information Improve cultural competence of transition team Cultural role models Increase capacity of community networks
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Tips for Enhancing Cultural Competence
Get to know the family and their cultural community Use cultural mediators or liaisons to community Learn to use words and forms of greetings in the family’s language. Recognize that families may be surprised by the extent of parent-professional interactions expected in the United States Initiate personal interactions not just written information. Have all materials translated Ask parents how they would like to communicate Call to discuss or talk about child’s progress Keep parents informed about upcoming IEP meetings, transition meetings, and ways in which they could provide input Create a welcoming environment Provide varied opportunities for family involvement and respect the level of involvement families feel comfortable
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Building Relationships with Families
Coming Together for the IEP Prepare in advance Connecting and getting started Sharing visions and transition outcomes Reviewing levels of performance & assessments Sharing resources, priorities, concerns Developing goals and objectives Specifying placement and related services Summarizing and concluding Types of adult services Role models Basic facts about transition Areas most wanted by families in one study: sexuality self-care getting along with others taking responsibility Guardianship and estate planning Role of IEP team members Criteria for evaluating IEP Postschool option Social security Identify transition cycle of the family Learn to LISTEN INVITE Involvement Pay attention to family concerns & postschool outcomes Exchange information Increase family support Listen empathetically Share information Communicate family meaning Focus on family identified issues Reliably respond Meet in friendly places Tell personal stories Share information and resources Use multiple formats & ways to provide information Ensure reciprocity Informal and frequent communication Arrange linkages with other families and available supports Michael Bridges’ Transition Cycle Theory
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