Planning Guide: Year-by-year
WHAT TO DO AND WHEN TO DO IT
Before Age 14:
- Begin transition planning through the IEP process. An IEP must include transition-planning services starting at age 16, but the process should ideally begin at age 14.
- Find out about diploma types and their requirements and discuss the options with your child and the IEP team.
- Talk to your child about puberty and sexuality. Before Age 16:
- Begin thinking about long-term housing because waiting lists can be several years long, consider adding your child’s name to the waiting list for residential programs. That will give you more options later.
- Make sure your child is receiving WorkAbility and life skills training as part of their transition plan.
- Learn about the admission requirements and funding options for any college or vocational training program your child is interested in.
- Begin talking with medical providers about the transition to doctors and specialists treating adults. If your child has complex medical issues, you will want to begin ï¬nding new medical providers now.
- Make sure your child has an understanding of any chronic health problems he/she has and how to manage them.
Before Age 18:
- Organize your child’s medical records and other documents.
- Find out if there is an age cutoff for any of the therapies your child receives and, if so, get recommendations for providers working with adults.
- Apply for SSI.
- Apply or reapply for Medicaid.
- Find adult medical providers to replace your pediatrician and pediatric specialists.
- Get legal advice about conservatorship and guardianship.
- Speak with your health insurance agent about medical coverage for your child after s/he turns 18.
- Check with Durable Medical Equipment (DME) vendors and home care agencies to see if there are age cutoffs and, if so, what agencies can continue to provide the necessary care.
- If appropriate, have discussions with family about advanced directives, including Allow Natural Death/Do Not Resuscitate (AND/DNR) orders.
- If you have a daughter, arrange for her to have a gynecological examination with a gynecologist who understands her disability.
- If you have a son, he must register with Selective Service. He may register at the post office or online at www.sss.gov.
- Help your child register to vote.
- Determine whether or not your child will need a Special Needs Trust (SNT) or other financial plan.
Before Age 21:
- Take advantage of IDEA-funded special education services that run through age 21, particularly transition services.
Before Age 26:
- Determine whether your child will continue to be covered through your health insurance policy after they turn 26, and if not, what insurance they will need.
In the Beginning
The High School Years
Now that your child is in high school, you will need to start meeting annually with the school to create your child’s Individualized Education Plan (IEP). You may have already begun the IEP process earlier in your child’s life; however, a high school IEP is a little different. Children are encouraged to participate in their own IEP at the high school stage. If possible, you should include your child in this process. The highs school level IEP should happen once your child turns 14. If they are capable of attending, they should be part of the discussion and planning of their education and goals for the year. Once he or she turns 16, the IEP needs to include transition steps to help them prepare for life after high school. This means talking about whether they will be going on to receive a postsecondary education or if they will be finding a job or enrolling in a day program. Through these decisions, the school is required to help you explore colleges, locate jobs, and find day programs for your child. As you explore these options, it is important to know most colleges and universities require students to have at least a standard diploma in order to attend. If your child wants to go to college, it is important to find out what types of diplomas are available at their school.
With so many different areas needing to be covered in the IEP, the background research conducted during your child’s middle school years is important. It will help alleviate the stress that is sure to come with the first high school IEP. By going into this first meeting knowing what your child’s rights are and what the school needs to help you with, you will be able to get more information from the school and create a constructive and beneficial IEP.
Six Simple Things You Can Do
Transition is such a huge and overwhelming topic that it can be hard to know where to start, especially when your life is already so full. Here are six things you can do right now to begin the process:
- Take stock of how much you already know. Look back on the early years, before your child’s diagnosis or immediately afterward. There was so much you didn’t know about your child’s disability and so much you didn’t know about your child’s capabilities. You’ve learned a lot since then and that knowledge is going to serve you well now, as you and your child move into the next stage together. Nobody is better equipped to help your child transition than you are. To help ease the stress of what you think you don’t know, make a list of what you already know. Once you see how much you’ve learned, you will know that you can tackle these new tasks. “Find some peace and contentment in the fact that you’ve done a good job so far,” Dr. Robert Naseef, author of Special Children, Challenged Parents: The Struggles and Rewards of Raising a Child with a Disability, advises.
- Face your fears. Anxiety can be paralyzing. But it can also be informative. Naming your fears will help you understand both your bottom line and your priorities. If your biggest fears revolve around your child’s medical condition, you know that transitioning their medical providers and medical benefits are first-order priorities – the rest can wait. If your biggest fears revolve around your child being bored and isolated after high school, then your first priority may be to focus on employment, education, or day programs.
- Establish your priorities. You can’t do everything at once. Use a list and a timeline to help you choose a small number of first-order tasks, questions, or issues. “Start with something small,” advises Mary Anne Ehlert, CFP, whose company, Protected Tomorrows, helps families navigate transition and future planning. “Choose one thing. Write it down and set a deadline. If you think of all the things you’ve got to do, you’ll never do it. Just take it one step at a time.”
- Start talking. Having casual conversations about transition with your child and other members of the family will help normalize the topic and get everyone thinking about options. You might say to your child, “I’ve been thinking about what life is going to be like when you’re an adult. What do you think it will be like?” “Anything out of the ordinary, we always talk about,” says Mary Pilster, the mother of a young man with autism, “because with autism, it’s important to give them a heads-up of what’s coming.”
- Find a mentor. There’s no reason to reinvent the wheel. Reach out to a family in your disability community who has gone through transition and talk to them about their experience. One good place to find mentors is through Parent to Parent. “Always find someone who has been through it or is going through it now to mentor you through,” says Teresa Jurado, who was a parent resource coordinator at Gatepath for many years. “There’s nothing like sitting face-to-face with someone who can say, ‘I did this and this is what happened.’”
- Work with other families. You don’t have to go it alone. Parents who work together can divide up tasks, share information, and advocate as a group. They can also give each other breaks as needed and – most importantly – devise new solutions. Dr. Naseef has seen families work together to create innovative answers for their children when the existing options weren’t working. One group of families pooled their money to buy a franchise so that their children with developmental delays would have a place to work; a typically developing sibling with an interest in business is managing it. Others are setting up group living arrangements for their children or creating carpools and social groups. “There’s power in community,” Dr. Naseef says.
A Successful Individualized Education Program (IEP)
While we covered the content of an IEP above, for many the process of creating the first IEP for a student begins as early as middle school. Some of you may have begun this process at an earlier age. However, here we lay out the steps that a family should plan on taking as they embark on the IEP process in preparation for life after high school.
“A student-centered approach means finding out the student’s interests, their hobbies, and their skills and how they spend their time,” explains transition specialist Eli Poblitz. “It’s asking the student what they want to do. Sometimes they have no idea and we have to give them an idea how the world connects to them.”
First, know that you are not the only parent unsure of what to expect and ask during your child’s first IEP. Since preparing for an IEP seems daunting, many organizations have already stepped up to create guides to assist you with the process. Rather than creating yet another list of what to do and what not to do, we searched through the other lists and are providing you with their best advice, and letting you know where you can find even more information about the IEP. After all, it is impossible to be over-prepared for these meetings.
Before the Meeting
- Plan ahead: Write down the questions and thoughts you have about the IEP. This will help you remember whatcame across your mind during your research. It is natural for questions and concerns to slip your mind, especially since you are likely to be provided with so much information. By writing down what is important to you and your child, you are making sure these topics will be addressed during the conversation.
- Get to know your child’s teachers: There are several people included in the IEP. A couple of these people will be your child’s teachers. Make sure you get to know them before the meeting. You can talk to them about what you and your child want for his or her future, and the teacher can weigh in on what she thinks is best for your child. It will also make you more comfortable in the meeting if you know someone there. The teacher will also be more likely to advocate for your concerns and what you and your child want if you have established a personal relationship with them. The teacher will know what you want as a parent and understand more how your mind works. This relationship can also be built with your child’s school principal or school psychologist.
- Review the materials: If this isn’t your first IEP, review last year’s IEP so you can remember what was discussed and what the goals were. This will allow you to see how your child has progressed toward these goals and what needs to be adjusted. As a parent, you also should be sent a document of your rights and responsibilities annually. If you have not received this, make sure to reach out for it. When you do receive it, read it over so that you understand what you are entitled to as a parent, as well as your responsibilities.
During the Meeting
- You are an important part of the team: As the parent, you are allowed to be part of the IEP by law. You also know your child better than anyone else at the meeting. While you may not have the professional experience that your child’s teachers and school officials have, you have the personal experience. Do not feel like this makes your voice and opinion any less important.
- Bring a support system: Your child’s other parent can also attend the meetings. It is important that you are both part of the decision-making process. You can also provide a support system for each other, making you feel more comfortable at the meeting. You both know what you want for your child and can ease each other’s worries. Make sure you both know what you want to accomplish at the meeting so that you can work together as a team for what is in your child’s best interest.
- Bring your child: More than anything, this meeting is about your child. While he or she has told you what they want from their education and what they wants for their future, it is important to allow them to voice these desires. The law states that your child needs to be included, if possible, during these talks. By bringing him or her to the meetings, they will not only be able to advocate for themselves, but they will also learn what the goals are for their education that year. Give your child the chance to speak for him or herself so that their confidence can grow and so that the other members of the team can see that this is also what they want.
- Ask questions: You aren’t expected to know everything going into this meeting. There are sure to be terms or facts stated that you haven’t heard before. When this happens, don’t be afraid to ask the others to clarify and explain what they mean. You may be afraid that asking such questions will make the professionals think you don’t fully understand your child’s disability. This is not the case. It will show them that you are invested in doing what is best for your child and want to understand as much as possible when it comes to bettering your child’s life.
- The key to success is compromise: While you know what your child wants and what works best for him or her, the school officials and professionals also know what works best overall in the school environment. They will cite facts and statistics to prove their points while you cite experiences from your child’s life to prove your points. What is best for your child is to try all angles. These professionals work with your child on a daily basis in the classroom. They see the larger picture of what the best options are. In order to make sure the goals you want reached in the year are met, you may need to let the professionals try their own tactics.
- Look at the big picture: You and your child are there to voice what you want to happen in the next year and what your child wants to do after high school. It is the job of the professionals to make a work plan to achieve these goals. Focus on the framework and the outcome, and let the professionals develop the strategies for how to arrive there.
- Sign the show attendance: You may not want to sign off saying you agree to the IEP yet, but it is important to sign off saying you attended the meeting. This will put it on record that you were there and part of the discussion
After the Meeting
- Review the IEP: Ask for a copy of the IEP that has been developed. Take it home and read over what was decided. Your signature is needed in order for the plan to be set in motion. If you are uncertain of specific areas or want to review what is decided before signing off, let them know. It is good to review the material so that you can make sure you didn’t miss anything and that you are okay with all the decisions. If you have any concerns about what is written in the plan, write a letter describing these concerns. Return these concerns and the unsigned IEP to the school so that an open discussion can be continued. You are allowed to ask for another meeting to discuss these concerns.
- Discuss the meeting with your child: Even if your child did attend, you want to sit down with him or her and explain what was decided. If there were terms or ideas you did not understand, then there are sure to be parts that they did not understand. Since the IEP is all about them, they need to know what the goals are and what they will be doing during the next academic year.
- Mark your calendar: During the meeting, you should have set markers for reports on your child. Make sure you have a calendar and can write down when you should be receiving these reports on your child’s progress. This allows you to make sure the school is keeping you in the loop and letting you know about her or his progress.
- Put in safekeeping: Whether you keep a filing cabinet with all of your child’s documents or an electronic copy
of everything, file away the IEP some place safe. This will be helpful when you are looking to review it before next year’s IEP and in case you ever want to review it during the year.
Ten Common Mistakes
When preparing and going through the IEP, there is so much to remember. While it is likely that you will forget to ask a specific question in mind, you can always contact the professionals afterward for clarification. In the meeting, however, there are topics and areas you want to make sure are addressed. Below is a list compiled by the Texas School for the Blind and Visually Impaired of ten common mistakes that you want to avoid:
- Believing the professionals are the only experts
- Not making requests in writing
- Being unfamiliar with the prior notice section of the procedural safeguards
- Requesting a related service rather than an assessment
- Accepting assessment results that do not recommend services you think your child needs
- Allowing assessment information to be presented for the first time at the IEP
- Accepting goals and objectives that cannot be measured
- Allowing placement decisions to be made before IEP goals and objectives are written
- Allowing your child’s IEP meeting to be rushed
- Not asking questions
To learn more about these mistakes in depth, read the School’s article. It is important to note that if your school does not have a program that works for your child, most schools will work with you develop a customized program. Be sure to ask about this option.
When your child enters her or his junior and senior years of high school, it is officially time to start thinking about post-graduation. Like their peers, including those who are typically developing, the prospect of college comes into the picture. For the most part, colleges and universities require students to have at least a standard diploma in order to attend. If your child wants to go to college, it is important to find out what types of diplomas are available at their school.
In 2011 the National Center for Special Education Research issued a report, “The Post-High School Outcomes of Young Adults With Disabilities up to 8 Years After High School,” which looked at a nationally representative sample of secondary school students with special needs who were receiving special education services in grade 7 or above.
Researchers followed these students for as long as eight years after graduation to see how they fared as young adults. While society still has a long way to go when it comes to providing support for people with special needs, the results of the study were encouraging.
During an IEP, you need to discuss with the school what type of diploma option is best suited for your child. According to the National Center on Secondary Education and Transition, there are six different options.
Not all states offer these options, though. Rather than offering multiple diploma options, some states offer the standard diploma with modifications to allow students with special needs the option of receiving it. In order to know if your state or school district offers modified standard diplomas, ask the school officials at your child’s school or during one of the IEP meetings.
Looking for a College
If your child wants to continue her or his education after high school, there are several choices to make. Postsecondary education can be broken into three broad categories: four-year college or university, community college or associate’s degree program, and vocational or technical school. Your child can become a full-time or part-time student. They can take classes with the aim of achieving a degree or simply for the purpose of learning what subjects interest them.
According to the US Department of Education’s Office of Civil Rights, postsecondary educational institutions are not required to provide free appropriate public education the way elementary and high schools are. Instead, they are required to provide appropriate academic adjustments to ensure that they don’t discriminate on the basis of disability. These adjustments might include extended time for assignments and tests, providing note takers or readers, assistive technology, preferential seating, or use of a calculator. Schools must also provide convenient and accessible housing to special needs students if they provide housing to non special needs students.
Most universities and colleges have a disability services office that is responsible for complying with the ADA and Section 504. When visiting prospective colleges, it will be important to make an appointment to visit this office. As a college student, your child will have to advocate for him or herself in order to get the support and accommodations they need. Visiting the disability services office with a list of questions will be an important first step.
“People have been very accepting,” says Mary Pilster, whose son Bobby has ASD and is now a student at San Francisco State University. She and Bobby met with the disability counselor when he started at community college and again when he transferred to a four-year university. In both cases, they showed the counselor Bobby’s IEP and talked about what accommodations he might need, including more time for tests. “Don’t sign off saying that you don’t need your IEP during junior or senior year of high school,” she advises. “It’s hard to get it back if you need it for college.”
In order to visit some of these colleges, you will need to travel around the country. Perhaps you have traveled before with your child and already know the best techniques for your family. Maybe you do all of your traveling by car so considering airplane travel is not necessary. If you are, however, looking into flying to certain locations to visit colleges with your child, know that there are ways to make the process easier. The Transportation Security Administration (TSA) has established ways to ensure that the process of security is as easy as possible.
All airports have security lines designated for people with disabilities and small children. If your child has trouble waiting in line, let the person checking you in to your flight at the airline desk know that you will need to go in this lane. She can direct you to where this line is and who you might need to let know that you are going in this lane. You can also tell one of the TSA agents that you need to go in this lane, and he can direct you to it as well. You can also ask the person at the airline desk if you can pre-board a plane with your child if she needs extra time getting settled.
With the advanced technology being used by the TSA at security checkpoints, it is rare that your child would need to be touched. If your child has a problem being touched, though, let the TSA agents know, and they can make sure she goes through the advanced imaging technology and the metal detector screening. If a pat down is needed, you can direct them on how best to conduct this search.
If you think you will require more assistance, you can call the airport ahead of time and let them know you will need a passenger support specialist when you arrive. By calling the TSA Cares hotline (855-787-2227) 72 hours before travel, they can ensure a specialist will be waiting for you and your child. You can also prepare this TSA notification card to provide the TSA agents with, letting them know about your child’s disabilities.
Here is a list of questions incoming students might want to ask when they visit a college disability services office:
- What is the procedure for students to identify themselves and their disability if they want to receive accommodations? What documentation is required?
- Are students required to be a full-time? If not, will this affect financial aid and the ability to live in the residence halls?
Is there a separate cost for any of these services? Are provisions available for:
– Extended-time exams
– Exemption from any exams/subject areas
– Readers and note takers
– Interpreters for exams, class lectures, and texts
- What experience does the college have in serving individuals with your child’s disability?
- How many students use the disability office’s services?
- What specific accommodations and services can be made for various types of special needs?
- If a professor is not in compliance regarding the student’s needed accommodations, how is the situation resolved?
- Is there adaptive equipment (i.e., voice-synthesized computers and calculators, reading devices, tape recorders, hearing amplification systems) available for student use?
- Does the school work closely with other support agencies, like vocational rehabilitation agencies?
- Is the entire campus accessible?
- Are there any student disability support groups on campus?
- Are there any types of financial aid/scholarships specifically available for special needs students? If yes, how do you apply for them?
- What do they consider the most difficult majors/classes for special needs students, and what support is there on campus for them?
Searching online for colleges that properly accommodate your child’s needs can be difficult. There are literally thousands of colleges available in the United States so it may seem impossible to find the ones that are the best fit for your child. A good place to start the search is with the College Board website. Visit their college search page and enter the types of special services you are looking for. The list will only show the colleges that offer these services. Other sources, like the Huffington Post and U.S. News, provide their lists and advice. To help ease with the search, we’ve included a list in our resource section with the proper contact information.
It is important for your child to physically visit every school in which she or he is interested. While a college may look perfect on paper, it can appear less ideal in person. By visiting each school your child considers attending, they will get a better idea of what type of accommodations they truly need and which colleges meet these needs. While visiting these schools, try to set up an appointment to meet with the disability services office to talk about your concerns. At the end of the meeting, ask for a business card so that you can follow up with any future questions. It will also be good for your child to send a thank-you letter to the person who talked with you.