Attention Students: Lead your own IEP meetings and take charge of your future

A Brief Overview

  • By the time you are 16 years old, the school is required to invite you to your IEP meetings. You can attend any time, and leading your own meeting is a great way to learn important skills.
  • If you need more help at school or aren’t learning what you need to learn, then your IEP might need some fixing. Your voice matters on the IEP team.
  • A website, I’m Determined.org, provides videos of students describing their goals. You can also print a goal-tracking worksheet from that website.
  • Read on to learn more about the parts of an IEP and how to get more involved in your own education.

Full Article

If you are a student with an Individualized Education Program (IEP), read this article to find out how you can be a leader on your IEP team. Your future is counting on you!

By the time you are 16 years old, the school is required to invite you to your IEP meetings. From that year on, your school program is matched to your long-term goals. It’s important to plan your time carefully so that every school day gets you closer to where you want to be when you are an adult. 

Learn to be a self-advocate

 An advocate (pronounced ad-vo-cut) is someone who asks for something in a public way. Public schools get money from the government, so they are considered public entities. When you ask the school to provide you with something that you need to succeed, then you are being a self-advocate.

The word advocate can also be an action word (a verb), but then it’s pronounced ad-vo-cate (rhymes with date). You advocate for yourself when you ask for what you need to succeed.

Here’s another way to use this hyphenated word: You can say that you “practice self-advocacy.” Leading your own IEP meeting is a great way to practice self-advocacy and develop important adult skills.

Your Transition Plan focuses on where you want to go

 The part of the IEP that focuses on your adult goals is called a Transition Plan. The Transition Plan is added to the IEP by the school year when you turn 16. The plan includes details about:

  • when you plan to graduate (you can stay in school through age 21 if your IEP goals require more time)
  • what jobs you might choose
  • whether college is part of your plans
  • what lifestyle you imagine for yourself (will you drive, cook, shop, live alone?)
  • how school is getting you ready for all of that

The Transition Plan is all about you and your future. You can start taking charge of your future by going to your IEP meetings. You may want to lead all or part of the meeting, and you have that right.

The law says it’s all about you

Your rights as a student with an IEP are part of a federal law called the Individuals with Disabilities Education Act (IDEA). The IDEA says that schools must include family members and students on the IEP team. If you don’t play on the team, you can’t win the game, right? This is more important than a game—it’s Your Life!

The IDEA is a unique law because it says you get what you need in order to access school and learning. Getting an education that is specially designed just for you is called an entitlement. What you are entitled to is called FAPE, which means Free Appropriate Public Education.

You can become a leader on your IEP team by learning more about FAPE and how to talk about what it means to you. Public education is free for all school-age students in the United States, but consider this question: What makes your education appropriate?

Here are some questions to help you think and talk about FAPE:

  • What is it like to have a disability?
  • What about your disability makes school hard?
  • What do you need at school that helps you learn?
  • Are you getting better and better at the skills you need to be good at?
  • Are your teachers helping you see what you do well?

If you are learning important skills at school, and your learning is helping you build on your strengths, then you are probably getting FAPE. If you need more help or aren’t learning the skills that you need to move forward, then your IEP might need some fixing. Keep in mind that the school is responsible to provide you with FAPE. You have the right to ask for FAPE.

Learn what your IEP can do for you

Here’s a starter kit to help you understand what your IEP says and how you can ask for changes. When you go to your IEP meeting, you have the right to ask the teachers and school administrators to help you read and understand your IEP.

These are some important parts of an IEP:

  • Category of Disability: This is on the “cover page” of the IEP document. It lists the type of disability that best describes why you need individualized help at school. You should know this category so you can understand how and why teachers are supposed to help you.
  • The Present Levels of Performance: This is the long section at the beginning of the IEP that describes how you are doing and what the school is helping you work on. The beginning of this section lists what you are good at. Make sure that section is complete so you can be sure the teachers help you build on your strengths.
  • Goals: When you qualified for an IEP, the school did an evaluation. You showed that you needed to learn certain things with instructions designed just for you. To help you learn, the teachers provide Specially Designed Instruction. They keep track of your progress toward specific goals in each area of learning. You can learn what your goals are and help track your progress. A website, I’m Determined.org, provides videos of students describing their goals. You can also print a goal-tracking worksheet from that website.
  • Accommodations: You can ask for what you need to help you learn in all the different classrooms and places where you spend the school day. Do you learn better if you sit in a specific part of the classroom, for example, or if you have a certain type of chair? Do you need to be able to take breaks? Do you do better on tests if you take them in a small, quiet space instead of the regular classroom? Do you need shorter assignments, so you don’t get overwhelmed? Helping your teachers know how to help you is part of your job as an IEP team member.

Get Ready for Your IEP Meeting

You can get ready for your IEP meeting by looking over the IEP document.  You may want to ask a family member or a teacher to help you read through the document. If you don’t understand what’s in your IEP, plan to ask questions at the meeting.

PAVE provides a worksheet to help you prepare for your meeting. It’s called a Student Input Form. You can use this worksheet to make a handout for the meeting or just to start thinking about things you might want to say. If you don’t want to make a handout, you might draw pictures or make a video to share your ideas.

These sentence starters might help you begin:

  • I enjoy…
  • I learn best when…
  • I’m good at…
  • It’s hard for me when…
  • I want more help in these areas…
  • I like school the most when …
  • Teachers are helpful when they…
  • I want to learn more about …
  • It would be great if…

You may want to think about your disability and how it affects your schoolwork. You could work on a sentence or draw a picture to help the teachers understand something that is hard for you. These might be the parts of a sentence that you can personalize:

  • My disability in the area of …
  • makes school difficult because…

Your handout can include a list of what you want to talk about at the meeting. Here are a few ideas, but your options are unlimited:

  • A favorite class, teacher or subject in school?
  • A time during the school day that is hard for you?
  • Your IEP goals?
  • Something that helps you feel comfortable and do well?
  • Something you want to change in your school schedule or program?
  • Graduation requirements and when you plan to graduate?
  • Your High School and Beyond Plan? (see information below)
  • Anything else that’s important to you?

High School and Beyond Plan

Maybe you started talking about what you might do after graduation when you were in middle school. Washington State public schools are required to help all students begin a High School and Beyond Plan by 8th grade. Ask a teacher, a school counselor and/or your parents if you haven’t started one of those: It’s required so you can graduate from high school.

It’s never too soon to think about what you want to do in the future. When you start building an IEP Transition Plan, it’s critical to think and talk through your ideas and how you see yourself moving forward. Here are some starter questions: 

  1. Where am I now? (strengths, interests, abilities)
  1. Where do I want to go? (aspirations, dreams, expectations)
  1. How do I get there? (goals, courses, activities, helpers, accommodations)

Here are some additional questions to help you plan:

Jobs, Trades, & Work

  • What jobs would be a good fit?
  • What training and/or supports will you need?
  • Does your IEP include community work experience?

Education after high school

  • Do your personal goals include college or technical school?
  • What accommodations will you need?
  • Have you contacted Disability Support Services on campus?

Living arrangements

  • Will you live with family, a friend or on your own?
  • How will you cook, clean, shop, & get around town?
  • Does your IEP have goals for Independent living?

Community experiences

  • What will you do for fun?
  • Will you join a club or support group?
  • How will you make friends and keep in touch?

It’s never too soon to plan ahead!

Setting goals and making some plans now will help your school and family help you make sure you’ve got the right class credits, skills training and support to make that shift out of high school easier.

Being a leader at your IEP meeting is a great way to build skills for self-advocacy and self-determination, which is another great two-part word to learn. Self-determination means you make choices to take control of your life. At your IEP meeting, you can practice describing what helps you or what makes your life hard. You get to talk about what you do well and any projects or ideas that you get excited about. In short, you get to design your education so that it supports your plans to design your own adult life.

Here are links to more ideas and tools to help you get involved in your own future planning:

The Center for Change in Transition Services has a toolkit for youth

Youthhood.org also has resources designed just for you

 

Students: Get Ready to Participate in Your IEP Meeting with a Handout for the Team

Students of all abilities have the right to a solid education to get ready for adult life. Students with Individualized Education Programs (IEPs) have a right to participate in IEP meetings to make sure the program is a good set-up for higher education, vocational training, work—whatever comes next after graduation.

Schools are required to invite students 16 and older to IEP meetings when life-after-high-school planning is discussed.

How students participate in their IEP meetings can make a big difference in the transition programming. To learn more about how to participate at IEP meetings, read PAVE’s article, Attention Students: Lead your own IEP meetings and take charge of your future.

The rest of this article can help you design a handout for a team meeting. The Student Input Form for a Meeting with the School is here for easy download.. If this format doesn’t work for you, you might choose just a few of these ideas to design a handout in your own style. You could also make a vision board or record a video to share at the IEP meeting instead of a handout.

Whatever style you choose for communicating with your IEP team, remember that standing up for yourself and asking for what you need is an important life skill.

Here are a few tips:

Keep your handout short to highlight your most important points.

You can send your handout to the school before the meeting. Or, take a moment when you arrive to hand out your one-pager and ask everyone to read it.

The top of your handout should include your contact information and other basics about the meeting. Try to include all of this:

  • Student Name: Jane Imincharge
  • Phone/email: 555-555-5555/memail@youthpower.you
  • Meeting Date/Time: XX/XX/XXXX, 3-5 pm
  • Location: Anywhere School
  • Topic: IEP Review, Evaluation Review, Section 504 Plan, Re-entry after Discipline, Etc.

Next you want to describe your goals, what you are good at and what help you need. These sentences can help you get started:

  • I enjoy…
  • I learn best when…
  • I’m good at…
  • It’s hard for me when…
  • I want more help…
  • I like school the most when …
  • Teachers are helpful when they…
  • I want to learn more about …
  • It would be great if…

Include a Photograph!

A photograph of you reminds everyone that you are the most important person at the meeting. Don’t be shy about bragging about what you are good at. It’s the school’s job to help you build on your strengths.

The final section of your handout describes your concerns. You may need to start on scratch paper with a longer list and then edit to settle on your key points. Remember that you want the team members to be able to read your handout quickly. You also want this list to help yourself stay on track at the meeting.

You might want to start this section with a statement like this: “My disability in the area of [briefly describe your disability challenge] makes school difficult because… “

Then, you can make a list with a heading like this one:

Here’s what I want to talk about today:

  • A favorite class, teacher or subject in school?
  • A time during the school day that is hard for you?
  • Your IEP goals?
  • Something that helps you feel comfortable and do well?
  • Something you want to change in your school schedule or program?
  • Graduation requirements and when you plan to graduate?
  • Your High School and Beyond Plan?
  • Anything else that’s important to you?

If your parent or another support person takes notes at the meeting, it’s great to ask them to help make a list of Action Items. Make a simple chart to list:

  • The agreement/action
  • Name of person responsible
  • Deadline
  • Communication plan, so you have follow-through

If your meeting is part of a formal special education process, such as an IEP meeting, the school provides a Prior Written Notice (PWN) to remind everyone what you talked about at the meeting. Your handout and notes can be part of the PWN. If English isn’t your native language, the Prior Written Notice must be provided in your native language or another mode of communication that you can understand.

Good luck at your meeting, and good job for training to be an expert self-advocate!

The The Student Input Form for a Meeting with the School is here for easy download. . If a download is not possible, all the information is above. If you need any support with this form, please email PAVE

Get Ready for Your Meeting with a Handout for the Team

Parents and students who go to meetings prepared and organized are more likely to come away feeling heard and with a good action plan. This article can help you and your student prepare a one-page handout to share with the school or another service provider. Most important is to highlight the student as the most important person at the meeting—even if he/she isn’t ready to attend in person!

If a young person is ready to lead all or part of a meeting, PAVE encourages this! Understanding the Individualized Education Program (IEP) and facilitating an IEP meeting is a great way to build lifelong skills and confidence. See PAVE’s article: Attention Teens: You Can Lead Your IEP Meeting.

For a student who isn’t ready or able to attend the IEP meeting, helping to prepare a document can be a great way to participate. Note that this form can be adapted for any service delivery meeting at school or in a childcare or medical setting.

Keep your handout short to highlight your most important points. This handout brings your child and your concerns to the attention of the group and sets a tone for the meeting that is child- and family-centered.

Note: You can send your handout to the school before the meeting, so team members have a chance to read it in advance. If there isn’t time to distribute it before the meeting, you can take a moment when you arrive at the meeting to hand out your one-pager and encourage everyone to take a few moments to read it.

The top of your handout should include your contact information and other basics about the meeting. Your handout will become part of the official meeting record, so get formal and include all of this:

  • Parent Name: Jane Hearmenow
  • Phone/email: 555-555-5555/memail@thisplace.com
  • Meeting Date/Time: XX/XX/XXXX, 3-5 pm
  • Location: Anywhere Elementary  
  • Topic: IEP Review, Evaluation Review, Section 504 Plan, Re-entry after Discipline, Medical provider appointment, etc.

Next you want to highlight what makes your child awesome. This is also a place where your child can voice his/her own opinions and “self-advocate” for accommodations or help. Here are sentence starters that might help you create bullet points or a paragraph about your child:

  • NAME enjoys…
  • He is motivated when… 
  • She’s interested in…
  • He wants more help in the area of…
  • She said she likes school the most when …
  • He says teachers are helpful when they…
  • She says she wants to learn more about …

Include a Photograph!

A photograph of your child shows the Very Important Person (VIP) and can make everyone smile as the meeting starts.

The final section of your handout describes your concerns. You may need to start on scratch paper with a longer list and then edit to prioritize your key points. Remember that you want the team members to be able to read your handout quickly. You also want this list to help track your priorities at the meeting. If it gets too long, you won’t be able to use it as a handy reference.

Here is a sample short paragraph to get you started, and your introductory paragraph can be followed by key bullet points:

My son/daughter’s disability in the area of [briefly describe the condition] makes school difficult because… My biggest concern is that …

My primary topics for today’s meeting include:

  • A need that isn’t being met
  • A communication or behavior challenge
  • Something you want to change because it isn’t working
  • A goal that isn’t being met
  • Something working well that needs further development
  • Anything else concerning

If you or a support person takes notes at the meeting, it’s great to conclude by making a list of Action Items. Make a simple chart to list:

  • The agreement/action
  • Name of person responsible
  • Deadline
  • Communication plan, so you have follow-through

If your meeting is part of a formal special education process, such as an IEP meeting, the school provides parents with a letter called a Prior Written Notice (PWN) to reflect agreements and discussion at the meeting. Your handout and notes provide checks and balances with the school’s PWN and guarantees that your concerns and those of your student are part of that formal meeting record.

The website of the Office of Superintendent of Public Instruction (OSPI) provides information about PWN requirements for schools in Washington. According to OSPI, “Prior Written Notice is a document outlining important school district decisions about your student’s special education program. It is not a meeting invitation. School districts must provide you with Prior Written Notice after a decision has been made regarding matters affecting your student’s IEP or eligibility for special education, but before any decision is implemented or changes to your student’s program take place.

“Prior Written Notice must be provided in your native language or other mode of communication that you understand.”

PAVE provides a variety of articles on core topics related to special education, including the IEP process, goal tracking, evaluation and Section 504 Plans.

The Parent Input Form for a Meeting with the School  is here for easy download. If a download is not possible, all the information is above. If you need any support with this form, please email PAVE

ABLE: An Account to Overcome the SSI Resource Limit for Adults with Disabilities

Living with a disability can be difficult and costly. Adults who receive benefits from the Social Security Administration because of disability often are challenged to improve their life circumstances because of a $2,000 resource limit. This limit means that a person receiving payments from Supplemental Security Income (SSI) or the Social Security Disability Insurance (SSDI) program cannot have a bank account balance or any other resources on hand that exceed $2,000, without losing part of their benefit.

Savings of $2,000 or less can be limiting for someone who might want to move into a new home, invest in a vehicle or save for higher education or a vocational training program.

The government provides a way for individuals with disabilities to overcome this barrier and save money. The Stephen Beck Jr. ABLE (Achieving a Better Life Experience) Act of 2014 allows individuals to save up to $15,000 annually without losing benefits. ABLE is modeled after college savings plans. The savings and/or investment account bypasses the SSI resource limit and can grow interest tax-free.

There are some restrictions:

  • The account holder must meet criteria for a disability that began before age 26.
  • The account may not receive more than $15,000 per year.
  • If the account balance exceeds $100,000, Social Security benefits are impacted.
  • Most accounts have a total lifetime balance limit of $500,000.

ABLE account money may not be spent on just anything. Generally, the account funds can be used to pay for expenses that may help improve independence or quality of life.

Here are a few examples of qualifying expenses: 

  • Housing
  • Education
  • Transportation
  • Personal assistance
  • Assistive technology
  • Health and wellness
  • Employment training and support

Savings in an ABLE account are insured by the Federal Deposit Insurance Corporation (FDIC). A chosen percentage of funds in the account may also be allocated as uninsured investment money. The account holder can choose a low-, median-, or high-risk investment strategy. Low-risk is the safest, most conservative option, with the lowest possibility for return. A high-risk investment might make more money but also could lose more. A median-risk investment is somewhere in between. Based on the account holder’s choice, the money is automatically allocated into some combination of stocks, bonds, and mutual funds.

An individual considering these options may want to consider how long the money will be in the market and risk tolerance. ABLE does warn that invested money is not insured and that money, including principle, may be lost over the course of an investment period.

Although the program was federally enacted, ABLE is state-run. Washington’s program opened for enrollments in July 2018. So far, enrollments have been low, with the State Department of Commerce reporting that only a few hundred people have opened accounts. Commerce estimates about 30,000-50,000 people in Washington are eligible for the ABLE Savings Plan and have the financial assets to open an account.

The Columbian newspaper in Vancouver recently included an article about the ABLE program and quoted Peter Tassoni, commerce disability workgroup manager: “I had hopes we’d have higher enrollment rates. I thought there would be more of a backlog of people wanting to join the program.”

Forty-one states and the District of Columbia have ABLE Savings Plans. Oregon’s plan was a year and a half ahead of Washington’s, so some Washingtonians signed up early through that option or through the national ABLE For ALL Savings Plan.

Individuals can shop around for the best program to meet their needs, and some states accept clients from all 50 states, including Virginia, Ohio, Nebraska, and Tennessee. Virginia is among a few states that issue a debit card for the account. The ABLE National Resource Center provides a toolkit for reviewing the various state programs to find the best fit.

The account holder, family and friends can deposit funds into the account using post-taxed dollars. Contributions are not federally tax deductible; however, some states may allow for state income-tax deductions for contribution made to an ABLE account.

One way to apply is to type “Open an ABLE account” into a search engine. If you also type the name of the state, you can find links that will take you directly to that program.  Washington’s ABLE Savings Plan links directly to a clickable form to determine eligibility. 

Here are additional resources for more information:

Washington ABLE Savings Plan: WashingtonStateABLE.com, Phone: 1-844-600-2253 from 9 a.m. to 5 p.m. or 1-844-888-2253 (TTY) from 6 a.m. to 5 p.m. Monday to Friday.

Oregon ABLE Savings Plan: OregonABLESavings.com, Phone: 1-844-999-2253 from 9 a.m. to 5 p.m. or 1-844-888-2253 (TTY) from 6 a.m. to 5 p.m. Monday to Friday.

ABLE For ALL Savings Plan (national plan): AbleForAll.com, Phone: 1-844-394-2253 from noon to 5 p.m. or 1-844-888-2253 (TTY) from noon to 5 p.m. Monday to Friday.

 

Get Ready for Summer with Camp Planning

Planning summer camp for children with special needs requires a bit of extra thinking and planning. Your initial questions might feel fear-based:

  • Will the camp be accessible enough?
  • Will she be safe?
  • Will they care for him? 
  • Will the kids be nice?
  • Is she ready? Am I ready? 

Getting organized can alleviate your fears and help set your child up for a safe and fun summer experience. These broad-based questions can help narrow your search:  

  • Would your family prefer a day or an overnight camp?
  • Given your child’s unique circumstances, would it make sense to arrange special supports in a camp designed for all children?
  • Would an inclusive camp with a caregiver be the best fit? 

A guide to help you seek answers to these and other questions is The Center for Children with Special Needs Summer Camp Directory, which lists camps designed to meet unique medical, social and emotional needs. This directory lists overnight camps and week-long adaptive day camps.   

Here are some additional tips for getting ready:

Talk About Camp Early and Often

Make this a family project. Discuss the possible activities with your child, look at pictures and call the people at places that sounded interesting. Focus on what sounds fun and what it might mean to make new friends and share adventures. Invite your child to talk about what might feel scary—and that feeling jittery or homesick is a normal part of going to camp for all children who are new to the experience.

Practice makes perfect

Many camps have open houses or visiting times so a child can look around and begin to get comfortable with the environment. Have staff show you around and talk about the schedule so your child can feel prepared and know what to expect.

Safety First

Help your child talk about self-care routines. Your child can practice asking for something he or she might need, and you can talk about who the helpers will be. This is great practice in the life skills of self-determination and self-advocacy! Your child can also help you write down special instructions for the camp staff. Talk openly to the camp director, and document allergies and things to avoid. Ask whether a specific staff person can be assigned to your child so that person can receive training directly from you. Make sure to include specifics about your child’s unique needs (e.g.: He tends to have a tantrum if you ask him to rush; she walks in her sleep; or he needs a calming spot, a hideaway or a swing.) Help the staff feel prepared to help your child succeed, relax and have fun!

Make sure to talk with your child about privacy, safe touch, and respecting one’s body. Ask the camp what they have in place to ensure safety.

Check in With Your Child’s Doctor

You can schedule a medical appointment to talk about do’s and don’ts at camp. For example, DO go swimming and have a great time, but DON’T jump from high places into the water if a medical condition like brittle bones makes this dangerous. At the appointment, you can request additional dosages or back-up medications as needed. If your child has serious health concerns, a camp with nurses or doctors trained in your child’s specific condition may be necessary. You or a paid caregiver also might be able to visit during lunch or another time of day to provide needed medical supports, and this can be discussed with your provider during this pre-camp medical check-up. Be sure that everyone involved knows what is expected and who is responsible for which aspects of your child’s care.  

Don’t forget to include sunscreen, lots of water, and a hat for summertime heat. Take note if your child is taking a medication that might increase heat sensitivity.

Make a List and Check it THRICE!

Many camps provide detailed packing lists, but your family’s list will include specific items for your child’s individual comfort or unique circumstances. Medications, emergency changes of clothes, pads, or other medical supplies need to be written down to make sure they make it to camp!

Zip-closure baggies labeled with a Sharpie pen might help you get organized. You can write instructions on index cards inside the baggies. A Care Planner can help, with a medical release, copies of medical cards and instructions about where to take your child in an emergency.  Here are some resources to help you create a Care Planner:

Organize Your Child’s Medical and School Documents with a Care Notebook
Familyvoices.org
Seattle Children’s Hospital Center for Children with Special Needs
National Center for Medical Home Implementation

Enjoy Your Me Time

Wish your child an excellent adventure, and don’t forget to treat yourself to some self-care time while your super special child is away at camp!

Attention Teens: You Can Lead Your IEP Meeting

If you are a student with an Individualized Education Program (IEP), you are in charge—even if no one ever told you that!

This individualized program and all that paperwork are about you: your goals, skills, interests….  As members of your IEP team, the school and your parents are offering to help you be your most awesome self, but you are the expert about your own life. Leading your own IEP meeting might be a great way to start taking charge of your education and your future.

If you’re getting close to your 16th birthday, you’ll want to pay extra attention to this idea because a Transition Plan gets added to your IEP in the school year when you turn 16. You may have started planning when you were middle school, when a teacher or counselor probably started helping you work on a High School and Beyond Plan. This plan is required for all students to graduate in Washington State. Now is a good time to take another look and think a little more carefully about what you want to do in the future. Here are some starter questions:

  • Where will you work?
  • Do you see yourself in college or in a vocational program?
  • Are you going to drive or cook or take a bus to the grocery store?

Setting goals and making some preliminary plans now will help your school and family help you make sure you’ve got the right class credits, skills training and support to make that shift out of high school easier.

Being a leader at your IEP meeting is a great way to build skills for self-advocacy and self-determination. That means you can speak up for yourself and help others help you. At your IEP meeting, you can practice describing what helps you or what makes your life harder. You get to talk about what you do well and any projects or ideas that you get excited about. In short, you get to design your education so that it supports your plans to design your own adult life.

You can also invite other people to your IEP meetings. Maybe you have an aunt or a brother who knows you well and might have some great ideas? You can invite anyone to help you create a better IEP.  Remember the first letter in IEP stands for “Individual.” That’s you, so speak up!

Here are links to more ideas and tools to help you get involved in your own future planning:

The Center for Change in Transition Services has a toolkit just for you

Here are some other great Student Resources

Healthcare in Transition

There are many transitions in the life of a child impacted by disabilities.  One transition that is often set on the back burner is the medical transition from pediatric to adult care.  This transition can be significant for a young adult with developmental or intellectual disabilities because they then become the individual responsible for their own care and for communicating their needs to their new physician, who may or may not have worked with an individual with an intellectual disability before.

It is important for these families to check with their child’s pediatrician at or around age 15 to see if their practice has transition planning and a physician that they work with.  If there is not a system already in place at your doctor’s office, you’ll need to do the work yourself.  The key for any parent or guardian is to stay informed and to work with your teen on how to communicate with the medical staff at the clinic.  If you have a young adult that is non-verbal or has very little language mastery, you can make a huge difference in youth participation by using a them to say how they are feeling, what they need, and any questions they may have that can be worked out ahead of time.  A good tool to bring to each appointment is an information pager that says who they are, ID numbers, insurance numbers, what their medical conditions are, what their medications are, unique issues to watch out for, and the concerns and/or reasons for the visit is also a good tool to bring to each appointment. To help lessen anxiety and help with communication, talk with your youth ahead of time, practice what to talk about, what questions they might ask and what the appointment is going to look like.  There are tools online that help with communication and getting ready for a doctor’s visit.  One very good tool is at http://hctransitions.ichp.edu/gladd/  They suggest using an acronym “GLADD” to help individuals remember important ways of letting medical staff know what they need and what is important.

GLADD stands for:

G(ive) – Give information about how you are feeling and what you have done to stay healthy

L(isten) – Listen carefully to your health care providers and learn to

A(sk) – Ask your doctors the questions you have about your health

D(ecide) – Decide at every visit with the healthcare professional decisions need to be made about what to do next

D(o) – Do your part in following the plan.

This web site has a lot of interactive tools and videos that are great for modeling with youth and helping them hear from others in their situation.  Other such tools can be found at: http://healthytransitionsny.org   and at http://cshcn.org/teens/
If your teen or young adult feels the need for support while in the doctor’s office they will need to sign a release giving their guardian or caregiver permission to be a part of the office visits, allowing you to to receive information concerning any treatment plan.  From age 18 on, the young adult will be asked to sign off on any medical treatment or services they may require, including medication, surgeries and therapies. Because of this, it’s important to research adult providers, and even visit their offices, to see if they have worked with individuals with complex needs, have a good referral process, and understand the complexities of working with adults with developmental/intellectual disabilities.  Just as you were an advocate for your child in the school system, it’s just as important to stay connected in the medical system as well.