Through the Looking Glass (Part 2)

Welcome back! If you missed Part 1 of our journey - you’ll find it here.

Today, we’re going a bit deeper through the looking glass. We’ll see three more “realities” - factors that have a major impact on your child’s life beyond IEPs.

Remember, we don’t have to deal with what we see all at once. We’re just taking a peek for now. Questions and feelings will bubble up. Be gentle with yourself. One step at a time. Let’s go.

Accommodations vs. Modifications

In IEP meetings, these words are too often bantered about almost interchangeably. But they are two very different strategies.

What’s the difference between the two?

• A modification is a change to the curriculum or to the essential curricular requirements.
• An accommodation enables someone to access the same curriculum and the same essential requirements as everyone else- but in a different way.

For example:

A student who uses a screen reader to access the same text and take the same tests as everyone else is using an accommodation.

However, a student is using a modification if her test has been changed in any way - such as adding a word bank, reducing the number of options on multiple-choice test items and/or eliminating particular test questions. Excusing a student from a required course is another example of a modification.

Here’s what you need to know:

Outside public education - modifications are never required, and in some situations, modifications are explicitly prohibited.

For example:

• An employer is never required to change the “essential functions” of a job.
• Postsecondary schools and accreditation testing services are often explicitly prohibited from modifying the content of courses and exams.

Our students need to prepare for post-high school goals that do not rely on the use of modifications.

“Reasonable Accommodations”

The accommodations outside public education may be very different than those our kids are used to. The Americans with Disabilities Act (ADA) speaks of “reasonable accommodations”.

It’s important for our kids to be familiar with low-cost and no-cost accommodations that can be used in the workplace and in postsecondary environments.

All this impacts transition planning in a big way.

The student and IEP team should be intentional about the accommodations used in middle school and high school. By the time the student graduates, the accommodations being used should align with what can be expected in the student’s next environment.

The good news here is the growing popularity of something called “universal design” in everything from architecture to technology. Universal design considers the needs of the widest possible range of users so that the final product is accessible to as many people as possible. Future posts will examine practical applications of universal design and technology for low and no cost accommodations.

Meanwhile, check out the Job Accommodations Network (JAN) to find all sorts of “reasonable accommodations” being used in the workplace by employees who have all sorts of disabilities.

Self Advocacy

We’ve been advocating for our kids all their lives. For years we’ve been learning about their rights and understanding the services they need. We’ve been their voice at many IEP meetings. But as our kids get older, they need to speak with their own voice.

When our kids enter the workforce, interact with adult service agencies, or begin postsecondary education programs, they must speak up for themselves.

In fact, a variety of confidentiality regulations actually prohibit us from communicating directly with health, education and service providers without our child’s written permission. Particular confidentiality regulations vary, but most begin when our child turns 18. For some mental health services, these rules may begin at age 14.

Many questions bubble up here:

• Do our kids have functional communication skills?
• Can they make their needs and preferences known to people beyond their immediate circle of friends and family (through intelligible speech or by alternative methods)?
• Do they know their rights and responsibilities in various situations beyond school?
• Can they advocate for themselves in an assertive, positive and respectful manner ?
• Do they have opportunities to practice speaking for themselves while still in school (in IEP meetings and everyday life)?

Remember, we don’t need to tackle all these questions at once. But families, kids and educators need to work together to be sure our kids get instruction and lots of practice in these skills before they graduate. We’ll focus on communication and self-advocacy skills in future posts.

Self Determination

When our kids are young, we determine the rhythm of their day-to-day lives. We make decisions for them, we solve problems and make plans on their behalf. As our kids mature, they want to to make their own choices, set their own goals, solve their own problems. A word for this is self determination.

Self determination and self advocacy go hand in hand. You can’t advocate well for yourself without making informed choices about what you want and need based on a good understanding of your strengths and limitations. There are many skills involved. You can click here to find a list of self determination and self advocacy skills.

The idea is to build these skills gradually over time as part of a child’s day to day routine, and to prioritize the skills that have the highest impact on a child’s quality of life. Self determination “looks” different for different people. Even people with very significant impairments can exercise self determination and advocate for themselves. Truth is - self determination is a major factor in quality of life for all people.

Learning and practicing self determination is a healthy part of growing up for all kids. Regardless of disability.

It takes years to develop self determination skills. Kids need explicit instruction and lots of guided practice. It takes effort to provide meaningful opportunities for choice-making and problem solving, self-evaluation and goal setting. Sometimes things get messy. Kids make mistakes. There are natural consequences. We sometimes feel like it would be easier to just make the decision and solve the problem ourselves. We get tired. And frustrated.

But we know our child’s quality of life, and even safety, will depend on strong self determination skills. And, they’ll be legally responsible for their choices and their actions once they reach adulthood. What to do?

In future posts, you’ll learn practical ways to partner with teachers and others to help our kids build these skills, step by step. Meanwhile, check out the free PYLN toolkits. These were developed by the Pennsylvania Youth Leadership Network - a fabulous group of very self determined and generous young adults who happen to have disabilities. Great stuff by great people! Future posts will explore ways to use the toolkits - but you can take a peek now.

OK. Time for a break!

It takes courage to look future realities in the eye, and to think about how what we do today can affect our child’s future. That’s what you’re doing. Congratulate yourself. And remember, this is a journey, step by step.

Do your child a favor, and take care of yourself along the way.

Leave comments if you like. See you in Part 3!

Tagged as: Transition 101