WVPTI Informer: Spring 2015

"I learned a long time ago the wisest thing I can do is be on my own side, be an advocate for myself and others like me." - Maya Angelou

Transition and Self Advocacy

What is self-advocacy?

Developing self-knowledge is the first step in self-advocacy skills. Learning about one's self involves the identification of learning styles, strengths and weakness, interests, and preferences. For students with mild disabilities, developing an awareness of the accommodations they need will help them ask for necessary accommodations on a job and in postsecondary education. Students can also help identify alternative ways they can learn. Self-advocacy refers to: an individual's ability to effectively communicate, convey, negotiate or assert his or her own interests, desires, needs, and rights. It involves making informed decisions and taking responsibility for those decisions. (VanReusen et al., 1994)

Self-advocacy is not a new concept in disability services. Enabling and empowering students to direct their own lives has been an underpinning of federal legislation for some time. For example, the Workforce Investment Act of 1998, Title 1, Vocational Rehabilitation Program, describes the philosophy of independent living as including consumer control, peer support, self-help, self-determination, equal access, and individual and system advocacy, in order to maximize the leadership empowerment, independence, and productivity of persons with disabilities.

Identify strategies for teaching self-advocacy

Students need opportunities to practice newly acquired self-advocacy skills. Teachers may wish to have students role play various situations, in which they can practice skills such as the following:

Students apply self-advocacy skills by calling and requesting information about a service they need for transition from high school. Students can prepare to visit an adult service provider by compiling a list of questions to ask and request for services.

By: Lynda L. West, Stephanie Corbey, Arden Boyer-Stephens, and Bonnie Jones, et al. (1999) http://www.Idonline.org/article/7757/

Art of Self-Advocacy

“Advocacy promotes social inclusion, equality and social justice by empowering people”

Once your child knows he has autism (or a disability), it's important to teach him how, and when to disclose that information and advocate for what he needs.

We recently wrote about how parents of children with autism can talk to their children about their disability. Once the child has a label for her differences, though, there's another important thing to talk to her about: When and how to share that information with others, and how to express her own needs.

When our children are young, one of our biggest jobs is to advocate for them. And for those with disabilities, that takes the form of fighting with health insurance companies to get the therapy he needs or working with the school system to make sure she is in a setting that works for her. We become warriors on behalf of our kids. As they get older, though, it's important for them to take on some of that responsibility.

“Courage is what it takes to stand up and speak; courage is also what it takes to sit down and listen.” -Winston Churchill

"I'm not going to always be here," said Sharon Fuentes, a blogger in Northern Virginia and the mom of a boy with Asperger syndrome. “My main goal in life, for any child, is to raise an independent, responsible adult who is able to function in the world and be able to contribute to society. We all have to advocate for ourselves. The reality is that with special needs kids, if they were able to learn these skills just by watching, they would. But they can't, so we have to teach them."

So what steps should parents take? "First, the child needs to be aware," said Fuentes, co-author of "The Don't Freak Out Guide to Parenting Kids with Asperger's." "You have to be aware of your own strengths, your own needs. You can't advocate for yourself until you know what it is that you need."

Once they're armed with information about their specific challenges, they can advocate for themselves. But often, children with autism lack the ability to filter how much they share, and with whom. So in addition to teaching them how to speak up for themselves, it's important to make sure they know there are times that they might want to keep information private, said Jim Ball, the executive chairman for the national board of the Autism Society.

"They are so trusting of people and so open and honest about who they are, which is one of qualities I love most about them, that they express it and tell everyone,” Ball said. “They are like that with other things, like sexuality, so you have to teach them that there is a time and place to discuss it. It's the same with self-advocacy."

Here are suggestions from Ball and Fuentes on teaching your child when and how to disclose a diagnosis, and how to express what she needs:

By Mari-Jane Williams June 5 at 3:34 pm The Washington Post For the full article; http://www.washingtonpost.com/news/parenting/wp/2014/06/05/teaching-children-with-autism-the-fine-art-of-self-advocacy/

Self Advocacy

Where do I start?

The most important place to start the transition process is with your child, who is now an adolescent with autism. His or her hopes, dreams, and desires should drive the transition process. Some individuals with autism can verbally communicate their goals and ideas for their adult lives. These conversations should serve as starting points to develop their transition plans. Transition planning is not a single conversation, but rather a process that will evolve over time. Some adolescents may not be developmentally ready to tackle the transition process. Others may be unable to express their wants and needs for the coming years due to limited communication skills. This is particularly challenging for families, as many want to provide their adolescent with the life that he or she wants. The transition process will take time. It is important that you work with your adolescent to provide the communication, self-help, and self-advocacy skills that he or she needs in order to be an active participant in the process.

Self-Advocacy is:

It is never too early to begin to teach self- advocacy skills.

How Do We Teach Self-Advocacy Skills?

When helping individuals to learn self-advocacy skills, both parents and educators can still assist them in decision making, help to explain things, and guide them. Teaching self-advocacy skills will be a process, and it will take time to acquire these skills.

There are many opportunities for teaching self-advocacy skills throughout the day. It starts with making choices – choices for meals, choices for leisure activities, even choices for which chores to do around the house. You may want to consider the following ways to further promote an individual's preferences as well as his or her ability to be more independent:

For the full article; http://www.autismspeaks.org/family-services/tool-kits/transition-tool-kit/self-advocacy

Child Advocacy Requires Careful Choice of Rhetoric

Every society wants the best for its children, and the United States is no exception. We love our kids and want them to have the brightest possible future.

Lift up her voice; Lift up your life!

But, then, why we do so little on their behalf when it comes to public policy? Visiting scholar William T. Gormley delivered a lecture on this topic at the Columbia University School of Social Work.

Gormley is a University Professor and professor of government and public policy at Georgetown University, where he co-directs the Center for Research on Children in the US (CROCUS). He focused his remarks on the findings of his new book, Voices for Children: Rhetoric and Public Policy (Brookings, 2012), in which he compares the effectiveness of difference “issue frames” on persuading voters of the worth of government initiatives focused on the well-being of children.

The paradox that child advocates must confront

It seems like a paradox: Children are beloved in the United States, but this does not translate into government policy. For instance, Gormley pointed out, we have a 22 percent child poverty rate, and we spend seven times as much on our senior citizens as we do on our children.

"If you look at a wide range of public policy and public policy outcomes, you see that children are not faring well in the United States," he said.

“Do not wait for leaders; do it alone, person to person.” ― Mother Teresa

What explains the low priority given to children's issues in this country? For Gormley, the reasons are innate and complicated. For a start, he said, children are not the only beloved group in this country. They must compete for limited resources with the disabled and senior citizens, for example. And, whereas members of these other groups have voting rights as well as their own advocacy organizations, children are unable to vote and require “surrogates” to advocate on their behalf.

Then there is the media coverage of children, Gormley noted. It is generally episodic—covering one particular human interest story about a single child—rather than thematic, connecting many stories to a larger political issue such as child poverty or vulnerability to gun violence.

"It can be difficult for us as a society to galvanize around children as an issue," said Gormley, "except when something really dramatic and exceptionally awful happens, as in the case of the Newtown Massacre."

A choice of issue frames and the importance of rhetoric

“The greatest lesson of the civil rights movement is that the moment you let others speak for you, you lose.” -Ed Roberts

In Gormley's view, the "issue frames" we use for children's causes radically affect their legislative prospects. In his book, he identifies four of these:

Gormley went on to note that while in the 1960s children's issues were framed primarily in moralistic terms, the past fifty years have seen a shift towards framing children's issues almost exclusively in economic terms.

“Without our fully noticing it, there has been a change in the kind of rhetoric used to advocate for children's issues,” he said.

“Self advocacy begins by understanding that rights are never granted from above. They are grasped from below by those with the courage and determination to seize that to which they are entitled.” -Tony Coelho

This is a positive development, he added, as according to both university and national studies, economic arguments on behalf of child programs are more consistently persuasive than moralistic arguments, especially to wealthy and independent voters whose influence matters the most.

But there is room for improvement, he stressed. In particular, advocates for pro-children institutions should seek to sharpen their rhetoric. Every pro-child policy needs to have a full explanation, an intermediate explanation, and one that “fits on a bumpersticker,” Gormley said, adding that child advocates must choose their words carefully because “sometimes all people will hear are the sound bites."

“It had long since come to my attention that people of accomplishment rarely sat back and let things happen to them. They went out and happened to things.” -Leonardo da Vinci

-- Contributed by Julien M. Hawthorne Note: If you would like to watch Professor Gormley's presentation in full, please go to YouTube video.

See more at: http://socialwork.columbia.edu/news-events/child-advocacy-requires-careful-choice-rhetoric-says-expert#sthash.4AF2fzCb.dpuf

Self-Advocacy Resources

“Unless someone like you cares a whole awful lot, Nothing is going to get better. It's not.” ― Dr. Seuss

More General Resources

Center for Parent Information and Resources

Looking for resources to support youth? CPIR Resource Library offers excellent resources under K-12 issues/Self-Advocacy on transition, independent living, self-determination, juvenile justice, and more.

WV Advocates

West Virginia Advocates, Inc. (WVA) is the federally mandated protection and advocacy system for people with disabilities in West Virginia. WVA is a private, nonprofit agency. Our services are confidential and free of charge. (800) 950-5250; http://wvadvocates.org

Trainings and Events Around the State:

“Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.” ― Margaret Mead

People First of WV
Mid-Year Training
May 12th 9:30 am - 3:00 pm
Parchment Valley Conference Center
1715 Parchment Valley Rd, Ripley, WV 25271
Call 304-422-3151 to RSVP

2015 Disability Caucus
June 22-26
At the Marriott Town Center
Registration Packet
Award Nomination Packet
WV Independent Living Hall of Fame Nomination Packet

Disability Caucus logo

Self-Study Advocacy Program for the New Parent Summer School 2015

Until now, parents have been barred from effective advocacy by lack of information and isolation. The Internet is changing the status quo.

Raising children is hard work. If you have a child with a disability, you'll work harder and longer. We want to teach you to "work smarter."

For the next six issues, Summer School 2015 will provide a self-help study plan that good parent advocates need to have.

You'll learn how to plan and prepare to be an effective advocate, and find out where to go to get the information you need.

This issue of the Special Ed Advocate is the Intro to Summer School 2015. Stay tuned for Session 1.

"It's the action, not the fruit of the action, that's important. You have to do the right thing. It may not be in your power, may not be in your time, that there'll be any fruit. But that doesn't mean you stop doing the right thing. You may never know what results come from your action. But if you do nothing, there will be no result." - Mahtma Gandhi

THANK YOU !!!!!!!

A very special THANK YOU goes out to all those who supported us and expressed appreciation of WVPTI's efforts toward meeting the needs of individuals with disabilities and the families of children receiving special education services.

The project is funded by a $205,000 grant from the US Dept. of Education, OSERS, and $97,500 grant from US Dept. of Health & Human Resources.