Getting Started

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Preparation for the Journey

 

Looking ahead, it might seem overwhelming to already begin thinking about your child’s transition from high school to adulthood. After all, he or she just started middle school. It is important to remember, though, that the years will go by quickly. Once your child starts high school, you will need to work with the school system to schedule meetings to plan your child’s education program and future. Those years are not that far ahead. That is why it is best to get ahead and take advantage of these middle school years to learn as much as possible.

In an ideal world, every family would begin the discussions about self-advocacy and person-centered planning while their children are still in middle school or earlier, but the important thing is to start planning sometime; even if you do not begin planning until your child is in high school. This doesn’t mean that you plan for your child, but that you plan with your child, helping them think about the best options for their future. Transition planning isn’t a one-shot deal; it’s a process that will continue long after your child is officially an adult. The most important thing is not to get discouraged. This may seem like a daunting process, but it is more than doable, and this guide will help!

SELF-ADVOCACY
Up until this point in your child’s life, you have made all the decisions for them. You were the one advocating on their behalf, making sure your child’s best interests were always met. Now that he or she has reached middle school, though, your student may be capable of also advocating on his or her behalf. It is important to teach your child how to advocate for themselves so that after the transition they can voice their concerns and so that you can see what their abilities truly are.

Throughout the transition process keep your child involved as much as possible with the decision-making. A great place to start is sitting them down to have a conversation about what they want for their future. While asking them questions about where they see themselves in five or ten years, teach them to continue to voice these desires.

STAYING ORGANIZED

There’s no way around it, the transition process generates stacks of paperwork. You’ll save yourself a good measure of time and frustration if you have a system for organizing both your electronic and your paper files. Some people find it works best to put information in binders. Others prefer to use hanging folders, perhaps in a portable file box so you can easily carry the files to meetings. Some people prefer to print out every electronic document so they have a paper record. Others prefer to scan every paper document so they have an electronic record. It doesn’t matter what system you use, as long as you have a consistent method for keeping track of the documents. A good organizational system will allow you to use your time checking things off your list, rather than searching for documents or trying to recall what you’ve already done.

Remember to keep your computer files as well organized as your paper ones. To avoid having to search your hard drive every time you need to find something, create some electronic folders in advance, and make it a habit to put your electronic documents in them as you go.

You can create email folders as well. These will help you keep track of correspondence with various agencies and programs. Whatever email program you use, make it a habit to save copies of both the emails you’ve sent and the ones you’ve received into the appropriate folder so that you have records of what you’ve been told. Create folders for your bookmarks or favorites too, so that you can easily find the websites on which you’ve found useful information.

Finally, make sure to have a system for backing up your data on a regular basis. A hard drive failure can cause months of hard work to vanish. One strategy is to manually back up your data onto two external thumb drives, keeping one in the house and another in your purse or car. You can also back up onto cloud-based systems like Google Drive so that you can access documents from anywhere, even if you’re not on your home computer. And there are many low-cost services that will back up your computer automatically every night so you don’t have to remember to do so.

What is self-advocacy?
According to Dr. Valerie Paradiz from the School for Autistic Strength, Purpose and Independence in Education, self-advocacy is a lifelong endeavor. Self-advocacy comes down to six key components:
1. Understanding your disability and being able to explain your disability either through words, pictures, or gestures
2. Knowing your rights that are protected by law
3. Speaking up for yourself and your interests
4. Asking for what you need in order to live day-to-day
5. Negotiating on your own behalf so that your needs and wants are met
6. Utilizing the resources that are available to you

“Parents are the one constant in a disabled child’s life. Parents can set an example and promote positive attitudes for their disabled child regarding school and the need for an education. They can advocate for the continuity of services for their child between school and adult services. In many ways, the parent has the most to gain or lose when it comes to the progress their disabled child is able to make concerning academic, social and vocational skills.”
—James F. Austin,
“The Role of Parents as Advocates for the Transition Rights of Their Disabled Youth”

There is clear overlap in these areas, but that is because they are all needed in order for an individual to advocate for him or herself. It may seem difficult to teach your child to advocate for themselves, especially in the same way that you currently advocate for them. Remember, though, that you do not need to teach him or her everything at once. Self-advocacy can begin with small tasks, like allowing your child to decide what time they want to wake up in the morning or what they want to eat for breakfast. Starting with these small steps allows you to build upon the foundation and building blocks that you will continuously put into place. Eventually you will have a child that is confident in themselves, their wants and needs in life. And if your child can’t get that far, you have learned to what extent your child can self-advocate and what level of freedom he or she can have in life.

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PERSON-CENTERED PLANNING
Part of the self-advocacy process is person-centered planning. It helps people with special needs shape their lives. For these young adults, it allows them to think about what is important to them, like their hopes for the future. While also learning about and discussing their lives, they get the opportunity to learn from the people closest to them about how to best approach their goals and reach them. The process allows you and your child to have focused discussions about both the details of everyday life and the large-scale dreams and values that make life meaningful and satisfying.

Ideally, person-centered planning is a facilitated process involving the people your child trusts and feels closest to. This means not just you and your spouse but also close friends, relatives, aides, teachers, or other professionals with a strong interest in your child’s well-being.

“The process helps them paint the picture of who they are, with the majority of the data coming from them, not their family or their case managers,” explains Eli Poblitz, transition specialist at the San Mateo Union High School District in California. “Once the student starts realizing who they are then I can start painting the picture of how the world connects to them.”

Person-centered planning is a chance for your child to discuss things like:

• Where he or she hopes to live
• How he or she wants to spend their days
• Who he or she wants to spend their time with
• If he or she wants to go to college
• What type of job they see themselves having
• What his or her hobbies and passions are

Each of these questions will lead to more questions as you and your child discuss what he or she wants the future to be like, what steps are necessary to get there, and what support he or she will need in order to take those steps. The process will include a discussion of what your child does well and what they need help with. These factors will help you develop a plan for achieving your child’s goals.

At these early stages of person-centered planning, it is important to remind yourself that your child may still be thinking as am adolescent and not in the long-term as adults do. If you ask them where they want to live in five years, they may say home. If you ask them what their passions are, they may say video games and the newest hot show on television. Such answers should not discourage you. It is likely that many of their typically developing peers would share similar answers.

It would be helpful to make these at least yearly discussions. When having these talks, provide your child with a work sheet to map out these answers. If he or she has difficulty writing, they can dictate the answers to you and you can write them down. If he or she would prefer drawing their plan, let them. The goal is to get them thinking about where they see their life going. While you are doing this, remind your child that they are not going to be held to these decisions and that they can change their mind at any time about what is most important to them and what they want for their future. By having your student create a physical copy of these thoughts and ideas, it provides a starting point for the following year and can show how he or she has grown and changed over time.

KNOW YOUR CHILD’S RIGHTS
In order to make sure you get the most out of the assistance granted to your child, you need to know the federal laws that protect your child and give them certain rights. The school system may not always be helpful in explaining to you what your child’s rights are so you should take it upon yourself to learn them. It will also be important to teach your child these in order to help them fully understand the self-advocacy process.

Over the years, the US federal government has enacted several laws that grant rights to individuals with special needs that include a free and appropriate education and a lack of discrimination in the workplace. Four of these laws critical for families planning the transition to adulthood are described below:

1. Section 504 of the Rehabilitation Act of 1973
2. The Americans with Disabilities Act of 1990
3. The Individuals with Disabilities Education Improvement Act of 2004
4. The Carl D. Perkins Vocational and Technical Education Act of 2006

Section 504 of the Rehabilitation Act of 1973
• The Rehabilitation Act of 1973 was signed into law by President Richard Nixon.
• This act protects individuals from discrimination based on their disability.
• This was the first law of its kind to protect the rights of people with special needs.
• It applies to any program, organization, or employer that receives financial assistance from ANY federal department or agency.
• It also extends to any local education agency, vocational education system, or school system.
• Section 504 of the Rehabilitation Act establishes Free Appropriate Public Education (FAPE):
◊ This provision requires school districts to provide FAPE to any “qualified person with a disability who is in the school district’s jurisdiction, regardless of the nature or severity of the person’s disability.”
• Who is entitled to FAPE?
◊ All school-age children with special needs as defined by Section 504 and the Individuals with Disabilities Education Act (IDEA)
• What is an “appropriate education”?
◊ Education services must be designed to meet the education needs of a student with a disability as adequately as they are designed to meet the education needs of a non special needs student.
◊ The evaluation of proper placement procedures to protect against the misclassification and incorrect placement of students
◊ Continuous and periodic reevaluation of students who receive special education and related services to ensure the placement meets their needs
• Ability of parents and guardians to review their child’s records, receive required notices, and challenge the
identification, evaluation, and placement decisions in regard to their child.
• FAPE also states that students with special needs must be placed in the same education settings as students without special needs as frequently as possible and as frequently as appropriate to the individual education needs of the special needs student.
• Students with special needs must receive specialized education services and support free of charge, just as a non special needs student would.
• Click the image below to view a chart from the National Center for Learning Disabilities that provides Free Appropriate Public
Education (FAPE) Myths compared to FAPE Facts:

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The Americans with Disabilities Act of 1990
• The Americans with Disabilities Act (ADA) was signed into law in 1990 by President George H. W. Bush.
• The act prohibits discrimination against persons with special needs and ensures that they receive equal opportunities in: employment (Title I), state and local government services (Title II), public accommodations (Title III), commercial facilities, and transportation. In 2008 major amendments were made to the law, and President George W. Bush signed into law the ADA Amendments Act of 2008.

The ADA Amendments Act of 2008 (ADAAA) expanded the definition of “disability” that applies to both the ADA and Section 504 of the Rehabilitation Act of 1973:
• It defines “disability” as:
◊ “An impairment that substantially limits one or more major life activities, a record of such an impairment, or being regarded as having such an impairment.”
• The ADAAA broadened the definition of “major life activities” to include “major bodily functions:”
◊ Major life activities include but are not limited to “caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating, and working.”
◊ Major bodily functions include but are not limited to “functions of the immune system, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine, and reproductive functions.”
• While the ADAAA rejects the US Supreme Court’s definition of “substantially limits,” it does not provide a new definition.
• The ADAAA also provides rights for individuals with special needs who are not eligible for accommodations in school under IDEA:
◊ These accommodations are the same as those set forth in Section 504 of the Rehabilitation Act of 1973.

The Individuals with Disabilities Education Improvement Act of 2004
• The Individuals with Disabilities Education Act (IDEA) was signed into law in 1990 by President George H. W. Bush.
• In 2004, the law was amended and reauthorized as the Individuals with Disabilities Education Improvement Act of 2004 (IDEIA) by President George W. Bush.
• A child with a disability is defined by the IDEA as:
◊ General: “with intellectual disabilities, hearing impairments (including deafness), speech or language impairments, visual impairments (including blindness), serious emotional disturbance (referred to in this chapter as “emotional disturbance”), orthopedic impairments, autism, traumatic brain injury, other health impairments, or specific learning disabilities; and who, by reason thereof, needs special education and related services.”
• It requires public schools to create an Individualized Education Plan (IEP) for each student each year until the student is 22 years old, regardless of whether the student is enrolled in postsecondary education.
◊ The IEP will be covered in greater detail on page 15 of this guide. In brief, it:
· Is a written statement of the uniquely designed education program to meet a child’s specific needs
· States the services the school will provide for your child and the reasonable annual learning goals for your child

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Includes your child’s current academic performance and levels
· Says how your child’s success and growth toward annual goals will be measured
· Explains how your child will participate in assessments – both statewide and district-wide – and the accommodations he or she will receive.
◊ Members of your child’s IEP team include:
· The parents of the child
· Not less than one regular education teacher of the child (if the child is, or may be, participating in the regular education environment)
· Not less than one special education teacher of the child, or where appropriate, not less than one special education provider of the child
· A representative of the public agency (who has certain specific knowledge and qualifications)
· An individual who can interpret the instructional implications of evaluation results and who may also be one of the other listed members
· At the discretion of the parent or the agency, other individuals who have knowledge or special expertise regarding the child, including related services personnel as appropriate
· Whenever appropriate, the child with a disability.
◊ The law requires that the IEP team begin no later than age 14 to address the student’s need for instruction that will assist him or her in preparing for transition. Beginning at age 16 (or younger, if determined appropriate by the IEP team), the IEP must contain a statement of needed transition services for the student, including, if appropriate, a statement of interagency responsibilities.
◊ These rights are protected if your child transfers to a new school in the same state OR if your child transfers to a new school in a different state.
· For these regulations and rights, see numbers 8 through 10 on the US Department of Education’s website.
◊ It must be reviewed at least annually to see if your child is meeting the goals set forth and readjust if necessary.

• This is just a brief overview of what your child is entitled to. For a more in-depth look at what this law grants your child, visit the US Department of Education’s website. It provides a step-by-step list of the special education process and the ten topics that an IEP must include.

The Carl D. Perkins Vocational and Technical Education Act
• The Carl D. Perkins Vocational and Technical Education Act was signed into law in 2006 by President George W. Bush.
• This law states that individuals with special needs must be provided equal access to a vocational education.
• The funds made available through this law can be used to pay for the vocational education services laid forth in an IEP that was developed in accordance with IDEA.

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