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Guiding Your Teenager with Special Needs through the Transition from School to Adult Life

Guiding Your Teenager with Special Needs through the Transition from School to Adult Life

Tools for Parents

Mary Korpi

Paperback: £13.99 / $21.95

2007, 216mm x 138mm / 8.5in x 5.5in, 144pp
ISBN: 978-1-84310-874-0, BIC 2: YXK JKS

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Chapter 1: The Parents' Role

Most children learn about adult life through observation and participation in family, social, community, and school-related activities and experiences. They integrate this information and form their own unique understanding of social expectations and their role in the world. Children with special needs are at a significant disadvantage in this process. Often the very nature of the child's disability limits his ability to understand, interpret, and/or assimilate new information. In addition, he may have little community experience, which restricts his opportunity to learn the social expectations of various social and community activities. Generally when parents choose to limit the child's experiences it is meant to protect him, but the fact of the matter is this protection will curb the child's knowledge and understanding of the world in which he lives.

Parents need tools they can use to safely include the child with special needs in a variety of social and community experiences. They need to know how to work with the child's unique learning style and challenges to encourage him to reach his full potential. The information in this book will serve as a starting point for parents to explore methods they may choose to incorporate into family life. Applying these techniques will enhance the child's chance to reach his full potential.

The two most critical times in the education of a child with special needs are during the early intervention period and again when he is preparing to transition out of the school system. Many parents find they need to develop strong advocacy skills in order to obtain medical and/or educational services that best meet the needs of the child. These advocacy skills will be required again, as the child becomes a young adult and prepares to leave the school system. Advocacy is critical in order for a young adult with special needs to have access to a full array of adult opportunities with the essential supports in place.

Parents and school personnel share responsibility to prepare students with disabilities for the demands of adult life. Young adults with special needs must learn how to be safe and at the same time to develop skills that will allow them to reach the highest level of independence that they are capable of achieving. Since students with special needs often require skills, information, and/or social expectations broken down into manageable pieces, the Individuals with Disabilities Education Improvement Act (summarized in Cortiella 2006 and referred to hitherto as IDEIA 2004),1 a federal law, mandates the inclusion of a specific area for transition planning2 in every student's Individualized Education Program (IEP)3 by the year he turns 16 or sooner. The Transition Plan outlines the student's long-term adult outcome, i.e. their plans for the future. It should include steps the student will take to explore his goals, learn new skills, and fine-tune his plans as he acquires knowledge about himself and the world.

Moving from the now familiar and hopefully safe school system into the world of adult services and programs is most often an area of concern for both parents and the young adult. These concerns are well founded. There are legislative mandates that require the school system to provide an appropriate educational program for a child with a disability until the year he turns 21. There is no equivalent mandate for adult services or programs after June of that year. Therefore, once a young adult ages out of the school system it is up to him and his family to navigate adult support systems to find ones that will match his needs. Optimally, participation in the transition planning process has given the young adult multiple opportunities to explore possible goals and to acquire the skills he needs to reach these goals.

When a young adult with a disability is aging out of the school system, parents will need to research the types and quality of programs and services that will best meet his unique needs. This is a critical time when the parent's advocacy skills will once again be required. Therefore, it is essential that parents understand the different types of services, eligibility requirements, and ways of accessing these services. Even parents who have learned to navigate the special education system and be effective advocates for the younger child will find that the processes, philosophies, and funding mechanisms are completely different in the world of adult programs and services, as well as post-secondary education and employment.

Parental advocacy can be even more complex during this transition because the young adult must be actively involved in the process. Decisions need to be made with him rather than for him. The young adult with special needs must be prepared to advocate for himself to the best of his ability. It often comes as a surprise when parents find out that the young adult with a disability must attend all meetings regarding adult programs. Parents may feel like a juggler balancing their own plans, dreams, and expectations with the young adult's wishes and the realities and expectations of adult life. Parents may not be adequately prepared for the shift in their role from primary spokesperson to that of support team member, albeit its most important and optimally most knowledgeable member.

Part II of this book includes an overview of various types of adult programs and services, funding sources, and eligibility requirements. This information will assist parents to advocate effectively with the young adult so they can assist him to make informed decisions and prepare for the programs and services that will facilitate opportunities for his continued growth with the necessary level of support.

From the beginning

Parents of children with special needs are often required to speak up to ensure that their child's interests are addressed. There are times when the parent must challenge doctors and other professionals who make recommendations that are inconsistent with the family's goals and/or values. Even when recommendations are based on sound psychological and/or educational principles, they may not fit with the intimate knowledge and unique understanding the parent has of their own child. While adapting to the ups and downs that raising a child with special needs can present, parents must navigate complex systems of support. Parents usually find they need to learn the ins and outs of the special educational system in order to ensure access to educational programs that meet the child's needs.

Attending to the day-to-day care of a child with special needs can present unique challenges for parents. Often these children do not demonstrate age-appropriate behavior. Sometimes families are subjected to rude questions and stares while going about routine activities with the child. For many families, the most difficult aspect of raising a child with special needs is the concern that this child may never achieve the hopes and dreams the parent envisioned for the future. In all likelihood, parents will have to modify their expectations to more closely align with the strengths and interests that the child demonstrates as they transition to adulthood.

To make this Herculean task even more daunting, each child is as unique as are all children. There are children who have challenges that they grow out of. Other children's issues grow as they do. Some behaviors respond to specific interventions while others start families on lifelong quests to find out what works. Children may have physical, emotional, and/or cognitive issues. Some children's disabilities are an interwoven combination of challenges. The complexity is as distinctive as each individual child. Caring for the child with special needs is not for the faint of heart - but this may not be a voluntary assignment. Children with special needs are members of every type of family and community.

Bearing in mind that each child is unique, there are some overriding expectations that can prepare him to enjoy a fulfilling adult life. First and foremost, the child must learn skills that will allow him to assume as independent a lifestyle as he is capable of. Strategies must be put in place that will build on the child's strengths. These strengths will help him learn new skills and/or modify challenging behaviors. Parents can apply specific techniques that will support the child's development as he matures. Incorporating these techniques into the family's routine will help to ensure consistent application of these effective tools.

Setting high expectations with the appropriate level of support will improve the child's perceived competence in the community as well as in his own eyes. The first step towards accomplishing this goal is for the family andthe educational team who work with the child to shift the focus of their interactions from dis-ability to ability. This shift is critical for the successful implementation of these techniques. Focusing on activities that lead to independence will help to improve the child's self-esteem. This may be accomplished by adding to theskills and knowledge in the child's repertoire. As the child becomes more competent, he will experience a boost in his self-confidence, and increased opportunities to have a positive impact in his personal life, at home, and in the community.

Preparing for life after high school

Optimally, age-appropriate, individualized transition goals are taught from pre-school through high school. The development of a student's IEP should always be based on the acquisition of skills that will enhance the child's independence when he leaves school. IDEIA (2004) requires the inclusion of a Transition Plan in each student's IEP by the time he is 16 years old. This plan should be designed to promote the development of specific core competencies that will support the student as he becomes an adult.

Transition goals may focus on the areas of functional academics, medical and personal care, interpersonal skills, employment, post-secondary education and/or vocational training, community participation, recreational activities, mobility/transportation needs, financial, and legal needs. Goals selected are based on each student's individual strengths and interests. They are organized into a plan of action steps that the student will explore with the support of the educational and community-based team. The transition plan is a dynamic document that changes in response to the student's emerging interests, aptitudes, and competencies.

The Transition Plan needs to focus on skills that will prepare the student for the real world - not simply for success in school. An example of a typical school requirement that does not translate to adult settings follows.

'In most classrooms students are required to raise their hand and ask to use the bathroom. Raising your hand is not the usual way of indicating the need to use the bathroom in any other setting. For example, employers do not want employees to raise their hand when they wish to use the bathroom at work. Although there may be safety issues regarding students' independent use of the bathroom, requiring a raised hand has nothing to do with teaching the student how to manage the safety issues in a bathroom whether in a school setting or in the community. Schools must examine the skills they are teaching students through a filter of preparation for real world activities rather than simply "that's how it's always been done."'

The example above highlights how a typical school requirement does not prepare the student for adult life. Transition planning requires schools to adapt their programs and expectations.

Schools are often designed to encourage students to receive information passively and follow teacher-designed routines. In most cases students are not expected to demonstrate initiative or to determine the best approach to a situation. While it is important for students to learn new skills while in school it is perhaps even more important that they develop an understanding of how they learn best. Adults who are able to make accommodations for their own unique challenges are most likely to meet with success outside of the school setting.

Therefore, the student's Transition Plan needs to go beyond traditional classroom activities. It must include opportunities for the acquisition of self-awareness, self-advocacy, and social skills that the young adult will need to live and work in the adult world. As the student prepares to leave the school system the goals need to include methods that support his emerging independence as well as preparation for vocational and post-secondary training opportunities.

Even a well-designed Transition Plan that outlines opportunities for the young adult to acquire the specific competencies he needs to meet his adult goals will be limited without the support of the student's family. The family needs to include the teen in appropriate community experiences and social opportunities that will support the development of social awareness and personal management skills. Participation in a variety of family and community experiences, along with appropriate school-based activities, will optimize the acquisition of the skills that the student needs to achieve the highest level of independence that he is capable of. Again, a good Transition Plan will address this by including the student in the process, making changes as they are needed, and relating the school-based goals to real world expectations.