Matrix Parents Presents: Transition to Adult Life and a Key to Success: Self-Advocacy

Matrix Parent Network and the Marin Center for Independent Living funded and supported the production of this podcast. 

Self-Advocacy is a phrase that is used often in special education, but often with little context as to what it means.  What does it mean for a student to be an effective self-advocate  and why it is so important?

In this episode of the Matrix Parents Practical Special Education Podcast for Parents, we look at what the term really means and why it is a critical skill to learn and practice, particularly in high school.  

We'll look at racial and socio-economic factors that are largely responsible for low levels of the concept of "societal shorthand", that is, the understanding how institutions work and how to access the help they are designed to provide.

And we'll bring it back to the conclusion that learning the way our society works, and how to access it's benefits, is more important than wealth, education and even cognition in determining who wins and who loses out on a successful transition to adult life.

Here are citations and resources related to this episode:

1.   My Life: Effects of a longitudinal, randomized study of self-determination enhancement on the transition outcomes of youth in foster care and special education https://www.sciencedirect.com/science/article/abs/pii/S0190740912002927

 2.   Self-Determination and the Education of Students with Disabilities Author: Michael Wehmeyer September 2002: https://transitionca.org/wp-content/uploads/2023/04/SD-Article-Wehmeyer.pdf

 3.   Vanderbilt University’s IRIS Center      https://iris.peabody.vanderbilt.edu/module/tran-scp/cresource/q2/p03/#content

 4.   Northwestern Journal of Law and Social Policy (JLSP)https://scholarlycommons.law.northwestern.edu/cgi/viewcontent.cgi?article=1028&context=njlsp

 5.   E.D. Hirsch on ‘Cultural Literacy’https://newlearningonline.com/new-learning/chapter-7/committed-knowledge-the-modern-past/e.d.-hirsch-on-cultural-literacy

Thanks to  soundimage.org for the free access to the AI generated music used in this podcast (https://soundimage.org/) 

Transcript

Today I’d like to talk about Students with mild-moderate disabilities and need for them to learn how to become strong self-advocates. This is due to its importance in determining successful adult outcomes. (1)

There are several components to this for a student, the first is to learn the day-to-day skills needed to advocate for themselves at school.

However, there may be circumstances beyond just learning how to speak up for their IEP accommodations, or giving input into their goals for next year’s IEP.

Students come from widely different socio-economic circumstances and have differing levels of knowledge and sophistication about the system they are in.  

So successful adult transitions need to account for complicating factors that are a part of the planning for the student.  Therefore, some students will need greater levels of support to achieve their goals.

The process of learning these skills can be the difference between a person who is successful in life, and one who is not.  The life skills that are measured in some studies that look at transitions use the following metrics to gauge success: independence a, having a job or being in school/training, having a bank account and credit card, living independently, and able to and access local community resources, having access to others in their communities.  

Field, Martin, Miller, Ward, and Wehmeyer (1998) defined self-determination (which is a mainly result good self-advocacy skills) as, “a combination of skills, knowledge, and beliefs that enable a person to engage in goal-directed, self-regulated, autonomous behavior. An understanding of one's strengths and limitations, together with a belief of oneself as capable and effective are essential to self-determination. When acting on the basis of these skills and attitudes, individuals have greater ability to take control of their lives and assume the role of successful adults in our society”. (2)

Let’s now look at one component: how a student can learn the real-world self-advocacy and self-determination skills they will need.

For this, I turn to the premier source of information on this, Vanderbilt University’s IRIS Center. (3)  

The IRIS Center has developed a process called Student Centered Transition Planning.  It is a blueprint for students, their families, and the educators involved, to create an IEP program that is centered around the student’s transition to adulthood by involving them in their own IEP program to the greatest extent possible.

The IRIS Center’s recommendation is to get a child involved in some way as early as possible, if they qualify for special education in 1st grade, that is not too early.

In elementary school, the participation would be getting the child to understand they have an IEP, what is in it, and to the greatest extent possible, how it affects them at school.

For younger children at IEP meetings, for example, they can at first introduce themselves to the team and have team members do the same and what their roles are.  

Students can progress through the elementary level by starting to let the IEP team know what they like and don’t like about their program, or they may be able to choose an accommodation they want.  

Some students will be able more, and some less, but any level of involvement as early as possible is important.

As the student progresses to middle school, their involvement should increase to include helping review data on goal progress with their teacher and possibly helping to decide on a good goal to work on.  Their attendance at meetings becomes more important at this stage, and they should be invited to all IEP team meetings.

By some point in high school, the student should be deeply involved in their IEPs, including helping with goals, self-monitoring them and advocating to general education teachers to follow their accommodations.

The focus of the IEP in high school (at least from the 10th grade on) should be on transition to adulthood.  Adults help the student look at post high-school choices and together with the student and parents, they map out the way the student can reach their goal.

A student-centered program requires the school be deeply involved and are the primary day to day drivers of a program.  This is an area that you may find fairly stiff resistance, mainly based on the way high school special education transition programs are set-up.

However, writing goals that lead to a greater degree of involvement by the student can create the momentum for staff to be more involved.  If a student is actively advocating for their classroom accommodations, for instance, it will generate communication between staff, which will make teachers more aware of, and more likely to follow, the IEP.

The second component that has a very significant effect on the IEP process is the racial and economic disparities that are endemic in the system.

When talking about self-advocacy, as with most of what we talk about in education, and special education in particular, the racial and economic disparity that exists in the system is always evident.

One of the major implications of this disparity is research indicates that parents who have more education and higher incomes get better results for their children with disabilities than parents who are in lower socio-economic circumstances. (4)

Margaret Wakelin, author of Challenging Disparities in Special Education: Moving Parents from Disempowered Team Members to Ardent Advocates writes, “Because the enforcement mechanisms are ineffective, the provisions of the IDEA are not being implemented equally across school districts.  Lack of enforcement of the IDEA particularly affects low-income and minority communities.  As a result of low enforcement, special education programs in these communities experience the highest levels of student isolation and long-term failure.

This educational crisis disproportionately affects minority students and serves as a modern method of segregation.  

Ultimately, once minority students are identified and evaluated for special education, they are more likely than other students with disabilities to be isolated within the school and experience educational disenfranchisement”. (4)

The reason for this is not to do with income alone, it has to do with the fact that most higher education/income parents are expert in something called “cultural shorthand”.  This is a term for people who are culturally literate, who know how our society works.

E.D. Hirsch, one of the most influential education thinkers and writers of the 20th century wrote a series of books called “What Every (1st-8th grade) needs to know”.  

They are part of a core knowledge collection that he developed. The purpose was to give a road map to cultural literacy for children (and adults). The idea is that someone who masters the curriculum in the series is more skilled in dealing with all aspects of our society.

He wrote on the topic, “‘Cultural literacy constitutes the only sure avenue of opportunity for disadvantaged children and combating educational inequality.  Children from poor and illiterate homes tend to remain poor and illiterate  and is an unacceptable failure of our schools”.

Hirsch recognized the critical importance of people possessing cultural shorthand.  It’s the idea that people who have the core knowledge of how a society works will have far greater success in academic pursuits and pretty much everything else.

The books include instruction in Language Arts, Math, History, Science and other typical school classroom curriculum.  In fact, in studying for graduate level testing to get into some teacher education programs, the publishers recommend test takers study Hirsch’s grades 1-5 books to prepare for the tests. 

Hirsch again wrote, ‘Breadth of knowledge is the single factor within human control that contributes most to academic achievement and general cognitive competence. Breadth of knowledge is a far greater factor in achievement than socioeconomic status. The positive correlation between academic ability and socioeconomic status is only half the correlation between academic ability and the possession of general information. That is to say, being ‘smart’ is more dependent on possessing general knowledge than on family background. Imparting broad knowledge to all children is the single most effective way to narrow the gap between demographic groups through schooling’. (5)

This directly applies to the idea of self-advocacy in that having the cultural shorthand to navigate social norms leads to confidence in dealing with institutions, like school. 

While having a parent who has a high degree of cultural literacy is  central to their being effective advocates for their children, parenting children who access the same knowledge will be better self-advocates.

So, I often recommend that parents introduce their child to the books at the level the child can access them.  Many kids with high functioning autism and/or ADHD, for instance, will have areas they may be intensely interested in, but others they will actively resist working on.

But even if the exposure may not be as fulsome as a parent might like, just knowing that a certain area of knowledge exists helps put it and other areas into perspective.  In other words, cultural shorthand many times consists of just a general idea of what something is about.  

The two resources discussed in this episode, the IRIS Center Student Centered IEP process and E.D. Hirsch’s “What every child should know” series are resources that can provide needed supports to areas of weakness for many of our students.

 Citations

1.   My Life: Effects of a longitudinal, randomized study of self-determination enhancement on the transition outcomes of youth in foster care and special education https://www.sciencedirect.com/science/article/abs/pii/S0190740912002927

 2.   Self-Determination and the Education of Students with Disabilities Author: Michael Wehmeyer September 2002: https://transitionca.org/wp-content/uploads/2023/04/SD-Article-Wehmeyer.pdf

 3.   Vanderbilt University’s IRIS Center      https://iris.peabody.vanderbilt.edu/module/tran-scp/cresource/q2/p03/#content

 4.   Northwestern Journal of Law and Social Policy (JLSP)https://scholarlycommons.law.northwestern.edu/cgi/viewcontent.cgi?article=1028&context=njlsp

 5.   E.D. Hirsch on ‘Cultural Literacy’https://newlearningonline.com/new-learning/chapter-7/committed-knowledge-the-modern-past/e.d.-hirsch-on-cultural-literacy