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This chapter begins with a discussion of the benefits of family-school collaboration and an outline of the ways that both schools and families can develop an effective partnership. Drawing from our research and that of others, we will outline common concerns of parents, teachers, and individuals with NMD. By being aware of these anxieties, schools and families can work together so that all parties can get what they need. Next, we will present a strategy for promoting family involvement. Finally, the reader will find tactics for effective communication and a family-teacher mainstreaming checklist and conference form to assist the family and the school in developing ways to have successful communication and planning.
Families and schools benefit from forming partnerships that are both supportive and instrumental in developing appropriate educational plans for the child. Effective family-school collaboration can lead to improved communication, resolution and prevention of problems, as well as improved services for the child. Given the ever-changing nature of neuromuscular disabilities, crucial components in providing a productive educational environment for the child include effective communication and problem solving techniques.
Turnbull and Turnbull (1990) have identified the multiple benefits of family-professional partnerships for families. The benefits for families of children with disabilities include: access to information concerning the child's disability and adaptive technology that the child may use; an increased awareness of the rights and responsibilities of a parent of a child with a disability; access to different techniques used to teach different skills; and access to resource information (i.e. vocational rehabilitation, Independent Living Centers (ILC), support groups or sexuality resources) available to them and their child concerning a wide variety of issues.
Schools also benefit from these partnerships. Schools gain insight into the child's development, behavior, and needs, as well as obtaining support in teaching the child new skills by including the family of a child with a disability in the educational plan. Establishing rapport and trust can also prevent communication breakdowns and potential difficulties. When schools and families can communicate frequently and work toward solutions rather than simply rehashing what the problems are, disagreements can be avoided.
Children with NMD present a unique challenge to families and educators because their disease is progressive. As a result, educational, social, emotional, and physical needs will continue to change and vary, requiring ongoing communication between home and school. For example, there will be times when children with some neuromuscular disabilities are experiencing more or less illness as a result of acute flare-ups and/or a decline in symptoms that affect classroom functioning. Because of these fluctuations, communication between the child, parents, and educators is essential in order to ascertain how a child is doing physically, educationally, and emotionally, so that appropriate expectations can be set.
A collaborative approach that includes the child, teacher, and parents is a critical element in inclusive settings (Stainback & Stainback, 1992) and is certainly important in any educational setting. Understanding the common concerns of parents who have a child with neuromuscular disabilities will also be helpful when developing a school-home partnership. In a study conducted by the authors (Strong & Sandoval, 1998), parents, teachers, and adult individuals with neuromuscular disabilities were interviewed in focus groups. Figure 1 represents some of the concerns expressed in these focus groups when they discussed their interactions in a school setting. Collaborative relationships and open communication tend to help allay these common concerns.
Figure 1. UNDERSTANDING THE THREE PERSPECTIVES:
A MAP OF CONCERNS
Open communication and collaborative efforts help alleviate concerns the child, parents, and teachers tend to have when interacting with one another in the school setting. For example, one of the concerns of teachers is the fears or misconceptions they have about the child's disability. Direct interaction between the child, parents, and teachers can produce collaborative solutions to accessibility issues while providing growth opportunities for each, and increasing the child's confidence in their ability to articulate their needs. At the same time, this collaborative effort increases the parents' sense of trust in the school and in their child's self-efficacy abilities. With each interaction, all parties gain valuable information and skills as well as an increased sense of trust in one another. This, in turn, increases each individual's sense of competency in his or her role.
Furthermore, active problem solving will most likely lead to decreased anxiety in the child, parents and teachers by offering them a tangible way of dealing with concerns. Aldwin (1994) points out that active problem solving, as a form of coping, can be a critical process leading to healthy outcomes for individuals dealing with illness. As a result, by facilitating active problem solving by the family, the school is providing an opportunity to improve the child's quality of life. It will also promote appropriate teacher attitudes and, by example, increase the inclusive behavior amongst the child's peers.
As stated in Chapter 2, legislation mandates that children with disabilities be involved in the educational planning process to the extent that they are capable of participating. Like all other children, students with disabilities vary in their abilities, maturity level, and understanding of planning short and long-term goals. While some students may be able to participate at an early age in a substantive way in the IEP or 504 Accommodation Plan process, others may only be involved marginally until they are older and, still others, may not have the skills to participate at all. Each child should be brought into the process when and where they are ready to participate.
Inclusion of the child in the process should be done for several reasons. First, the law mandates it. However, there are other, more important reasons, to include children with disabilities in the design and implementation of their educational plan. The following are just some of the many benefits for all concerned parties and include examples of how this participation might be encouraged.
Involving the child in the process will help him or her develop abilities they will need later in life such as effective communication skills, short-term and long-term planning techniques, problem solving proficiency, and self-efficacy. These skills are already a part of the educational process for children without disabilities but tend to be limited or left out of a disabled student's educational experience. And yet, the “empowerment” of students with disabilities is frequently cited in journal articles and conference papers by members of organizations like the Association of Higher Education and Disability (AHEAD) as a major on-going problem. The sooner a person with a disability takes control of the decisions which affect his or her life, the more empowered the individual becomes. By bringing the child into the educational planning process, the child is empowered to make decisions affecting her or his future while learning valuable life skills.
These skills can facilitate other learning that makes it easier for a child to transition into an independent adult. For example, some children with disabilities need the assistance of a care attendant throughout their lives. This person (usually more than one) provides the individual with daily care needs such as help with bathing and toileting. During childhood, the parents may provide some or all of this assistance or they may manage the child's care attendants. For someone who requires care attendants to function independently, managerial type skills are necessary in order to have a higher quality of life. While it may be required for the parent to take responsibility for this when the child is young, the child should at least begin to take on some of these managerial tasks as he or she matures. By promoting the child's decision-making processes at an early age, one is encouraging the learning of valuable life skills through the empowerment of the child. By providing the gradual training of these abilities over time, rather than all at once, the child has the opportunity to become effective at various skills he or she needs in order to live a happy and productive life.
Beyond what the child may learn from being part of the process, she or he also brings a specific and needed perspective to the table. This viewpoint is needed because it is the child's life that is being planned and, therefore, the child's life goals that need to be placed at the forefront of the planning process. This is especially true once the student reaches the age of fourteen and a transition plan that takes into consideration the child's personal wishes/goals for the future must be implemented. While they may not be able to help with specific long-term plans at a younger age, children will be the first ones to know they are having problems in a certain area and/or may think of solutions to problems that work and are cost effective, but that adults might not consider. By providing the child with another opportunity for experiential knowledge, the parents and educators might learn as well.
Promoting the child's involvement requires listening to the child, because it is his or her life that parents and educators are helping plan and shape. Like non-disabled children, children with disabilities should be consulted and involved in their educational process. For this to happen, both parents and educators need to practice active listening with regard to what the child is communicating about their needs and goals for the future. For example, a child may wish to become a scientist when she or he grows up. By actively listening to the child's needs and goals, both parents and educators can facilitate learning that is both appropriate and necessary for attaining the child's goals while, at the same time, providing for the child's needs.
As with all children, some are quick to communicate their needs and goals while others are not. Knowing how the child communicates his or her needs and goals (verbally and non-verbally) is what makes for successful active listening. By encouraging the child to communicate, e.g. whether they understand something or what they want to learn, both parents and teachers are persuading the child to become a more effective communicator while also learning something of the child's abilities, habits, learning styles, and goals for the future.
As the child gets older, he or she will be able to not only articulate his or her needs but also solutions to problems in a more effective manner. By practicing active listening techniques, both parents and teachers are modeling for the child advanced communication skills that will help the child transition into the adult world. The earlier this process is utilized, the more time the child has to become adept at communicating and the more effective the child will become at utilizing various communication techniques.
Child involvement in the educational planning process also requires encouraging the child to be an active participant in his or her education. This can be done in a variety of ways. The educator might ask the child to explain how a specific piece of assistive technology (such as adaptive computer software that the child uses) works. The child might be made responsible for relaying information between the parents and the teacher. Or, the child might participate in all aspects of his or her educational process from IEP/504 Accommodation Plan meetings to training educators in wheelchair repair to learning in and outside the classroom.
By having the child participate in his / her educational plan in a more direct manner, the child becomes a valuable resource for information and ideas rather than just a problem in need of a solution. Inclusion of the child in the process also sends a message to the parents that the educational system is actively empowering the child as well as educating her or him. In the process, it is modeling, for parents, who tend towards over-protectiveness, more appropriate and productive behavior with regard to their child.
Although formal conferences can offer focused discussions, informal communication amongst all parties may be even more important in creating an on-going collaborative effort. Beyond this, most parents prefer informal and more frequent communication with their child's teacher and school. Turnbull and Turnbull (1990) point out that, similar to individualizing instruction for children, an individualized approach to parental involvement is also important. A good first step consists of asking parents how they would like to participate in their child's education.
Providing a variety of ways that the parents can both directly and indirectly participate will encourage different parents to contribute in various ways. Some parents may prefer to participate indirectly, such as in helping with classroom materials, whereas other parents may choose to contribute directly, such as in assisting in the classroom on a regular basis. Recognizing that families have different responsibilities and social activities to which they must also attend will help one remember to be flexible and, in turn, will help in finding a good "match" or "fit" for parental involvement.
While society has changed with regard to gender roles, many within the educational system still assume that the mother is the primary care giver of the child and hence assume that she will be the primary actor in the child's educational development. Today, many children are raised within complex family networks (i.e. single parent households or multiple households with multiple sets of parents). Recognizing how all family members in the child's life can play a role in his or her education is key to effective family involvement.
Educators should take into consideration the type of familial network within which the child is growing up and should encourage all interested parties within the familial network to participate in the child's educational development. This could mean involving grandparents or significant others in educational activities or providing a role for siblings in the process. Each family, like each individual, is unique. Appreciating that uniqueness will make more opportunities for family contribution possible.
Knowing the family's preferences for certain modes of communication and offering multiple ways to keep up on-going communication can also promote parental involvement. As suggested before, asking parents when it is best for them to meet and meeting when they are available encourages their attendance at conferences. If it is more feasible for parents to meet via conference calling or using e-mail, then these options should be discussed. Providing the option of writing in a "communication notebook" can also increase communication and provide frequent and timely information. This method of communication can be particularly helpful when a child has chronic medical conditions, such as NMD, which change frequently, and/or when teacher and parent's work schedules make it difficult to communicate on the phone or in person.
Another forum for including parents in the educational process includes offering home visits. Scheduling a home visit can often alleviate the pressure of a more formal conference. By cultivating an active interest in the child's and the family's needs, by offering to visit the home, educators have an invaluable opportunity to develop parental participation and enhance trust while, at the same time, gaining the opportunity to learn more about the child outside a school setting.
In addition to case management, conferences or meetings also offer a forum for problem solving and communication. Most parents of students with disabilities are willing to and do attend meetings with educators. However, parents often report that they are not satisfied with these interactions. Parents of children with disabilities state that meetings with school officials are often confusing, disorganized, and too technical (Turnbull & Turnbull, 1990). Parents also feel as if the needs of their children are being ignored or take a back seat to the financial concerns of school officials.
Although parental input is mandated by IDEA, many parents assume a passive role in conferences and appear to be intimidated by technical jargon and test scores. Educators and parents can take several steps to improve the quality of conferences, an essential step in establishing a positive, trusting relationship between the home and school.
To improve the quality of conferences educators can:
1. Plan the meeting . Before the meeting, educators can identify objectives and develop an agenda by compiling a list of issues that all concerned parties have expressed. This means educators should ask parents for input about issues that they would like addressed at the meeting so that the agenda reflects their input. Parents should be consulted to determine what dates and times at which they are able to attend. Follow-up reminders to parents about the conference will also increase the likelihood that they will attend the meeting. Arrange for refreshments and for childcare when it is needed.
2. Structure the environment to promote communication . The meeting place should be comfortable and arranged to promote communication. It should also be wheelchair accessible if any of the participants in this meeting needs this accommodation. It should be a quiet, distraction free space so that everyone can participate equally. Providing conference material in alternative formats (i.e. large print or on tape or provide a reader or interpreter) for anyone present who needs such accommodation (whether it is the child, parent, or school staff member who has a disability) acts as an implicit message that everyone's input is wanted and needed.
3. Conducting the conference . There are many simple ways to promote open and effective communication that will allow everyone in the meeting to participate and understand the proceedings. Some of these strategies include: 1) Start on a positive note by discussing the student's strengths; 2) Present concerns about the student's performance in a clear and concise way using examples and avoiding jargon; 3) Give parents and the child the opportunity to discuss issues and concerns from their perspectives. Both parents and the child should be encouraged to bring a list of questions, comments, and concerns to the meeting; 4) Listen attentively to the parents' and the child's comments, questions, and suggestions; ask questions, when necessary, to clarify what has been said; 5) Affirm the inherent dignity in all parties involved and strive to maintain a climate of justice and freedom of expression marked by respect for each individual participating in the meeting.
4. Evaluate the conference . After each meeting (either in person or by mail), ask parents and the child if the meeting addressed the issues they wanted to discuss, whether they had sufficient time to present their opinions, whether they were satisfied with how the meeting was conducted, and whether or not they were satisfied with the outcome of the conference. Encourage all parties to suggest improvements in the meeting process.
Parents can also make meetings more productive. They see their child in a variety of settings and are in close communication with their child's physician. To prepare for a conference, parents can:
1. Plan for the meeting . Write a list of questions and/or concerns you wish to raise at the meeting. Schedule the meeting so that you will have ample time to discuss each item on the agenda without interruption.
2. Bring information to the meeting that might be needed by educators . For example, be prepared to update school personnel on the child's medical status and behavior at home. Alert the school to changes in the family status that may be affecting the child's schoolwork, such as divorce or death. Bring past medical and school records that the school may not have, particularly if you have recently moved to a new school district.
3. Participate actively . Ask questions if anything is not clear or if you have a particular concern or need information about a particular topic related to child development. Point out both consistencies and inconsistencies in the child's behavior at home and at school. Suggest solutions to problems that arise and, perhaps, provide examples of how a particular solution might work. Pass on information about resources that you may have found that could be helpful to teachers and / or other parents of children with disabilities such as websites or listservs, books, or local groups and organizations.
4. Evaluate the conference . Let the school know if you have further questions or if there are topics that were not covered during the meeting. Let them know what was satisfactory and what was not satisfactory about the conference.
While the goal is to foster and maintain a good working partnership with parents of children faced with NMD, there are circumstances that sometimes occur which make this difficult. Educators and parents should be informed of their options if communication between the school and the family breaks down. It is in the best interest of the child for the school and the family to work towards reaching an agreement about a child's education.
Turnbull & Turnbull (1990) argue that communication breakdowns result from faulty systems, not faulty individuals. When communication is approached in a systemic way, schools and families can develop effective ways of collaborating. For example, implementing a regular team meeting that includes all key participants in a problem-solving format can provide ongoing communication. In addition, when parents can establish trust with one or two individuals in the school, problems can be solved as needed, and parents can exercise their right to be involved in their child's education.
When a disagreement persists after efforts to resolve the problems have been tried at the school, two options are available to parents and educators: 1) Schedule a mediated conference , in which an outside, unbiased party serves as a mediator in a conference situation in order to encourage open communication between educators and parents that promotes resolution; or 2) Invoke Due Process rights, which allow either parents or educators to initiate a due process hearing to resolve disputes about a child's educational program. Both parents and educators have a right to appeal and contest each decision made by a placement team. In due process, an impartial hearing officer will conduct a hearing in order to make a decision about the issues in question.
The Individuals with Disabilities Education Improvement Act mandates the involvement of the child and parents in the educational programming of students with disabilities. Beyond the legal requirement, it is also sound educational practice. Both the school and the family benefit from forming working partnerships. However, ultimately the child benefits the most from these collaborative efforts by receiving a better education.
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Suggestion/Outcome Table for Successful Parent Involvement
Activity/Suggestion |
Outcome |
Whenever possible, provide food and child care (when needed) during parent meetings. |
Increases participation and establishes a clear message that family involvement is important. |
Provide a variety of parent involvement activities that include both indirect and direct ways of participating. |
Parents can choose the activities that they feel the most comfortable with and that match their strengths. |
Provide specific activities in which extended family members participate. |
Increase participation and broaden support to the child by including extended family, such as grandparents, siblings, and/or significant others. |
Suggest homework activities that promote family involvement in the child's education. |
Increase family awareness of what the child is doing in school and promote support for the child. |
The school can offer parenting classes which focus on educating parents about disabilities, educational rights, how to help their child with homework, and about effective parenting practices. |
Promote parent knowledge about educational rights, child development and increase parental awareness of effective ways to work with their child. |
Offer curriculum review workshops that focus on specific educational objectives and methods of instruction. |
Promote parental understanding of achievement and curriculum. |
Encourage frequent parental communication and let parents know that they can request a conference at any time. |
Prevent potential problems from developing and increase awareness of both parents and teachers regarding the development of the child. |
Include parents when planning the parent-involvement activities for that school year. |
Develop a parental involvement program that reflects the priorities and strengths of the parents in your school. |
Train a parent facilitator who can provide a liaison between the home and school and who can develop training and education meetings for parents. |
A parent representative can provide an effective link between parents and schools, can involve hard-to-reach families, and can often target areas that are important to parents. |
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Checklist for Parent Teacher Conferences
PARENT-TEACHER CONFERENCE CHECKLIST
• Build rapport by having informal and formal talks where a common understanding can be developed.
• Develop a working relationship that will promote open and frequent communication and collaboration.
• Obtain and provide information about the child's educational progress, strengths, and needs.
• Share concrete information that will help the teacher/parent work with the child to promote as many opportunities for success as possible.
• Work toward solutions rather than focusing on problems.
• Develop a clear action plan and follow-up plan when needed.
• Discuss ways of continuing ongoing communication, such as, a notebook that goes back and forth from home to school, home visits, and telephone calls as needed.
• Learn about resources available to the child, as well as the key people involved in the child's school/home who can provide support.
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PARENT-TEACHER CONFERENCE OUTLINE
Date: Time:
Teacher: Other Staff:
Goals of the Conference:
Child's Strengths and Abilities:
Update Academic Progress/Identify Needs:
Update Physical Needs/Health and Medical Information:
Parent Concerns:
Physical Access in Classroom:
Adaptive Equipment/Technical Assistance Needs:
Recess/Lunch/Social and Extracurricular Activities:
Action Plan:
Teacher:
Parent:
Other:
FOLLOW-UP DATE:
UC Davis: Educational Mainstreaming and Children with a Neuromuscular Disease