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On any given day, the feeds of my social media accounts are brimming with resources, stories, and motivation about disabled people: parenting tips, educational advice, how to work with someone who has a disability, etc. About us, but too often not including us. There are countless communities geared towards supporting parents, family members, and professionals, sharing words of encouragement on how to be the best advocates for the disability community. And while I understand such support networks are usually well intentioned, in many cases, they take the power out of the hands of the people who know themselves and their needs best: people who are actually disabled. Don’t get me wrong – allies, or what I refer to as advocate-allies, are incredibly important to advocacy efforts. “Ally” implies being supportive, while “advocate-ally” paints a more accurate picture of people who join in along with self-advocates. And true advocate-allies deserve the utmost respect. But a real advocate-ally is someone who doesn’t overshadow the voices and efforts of the people who experience being disabled every single day. Of course, as a disabled child is just beginning life, parents and professionals have a responsibility to play a key role as advocates. Obviously, a four-year-old wouldn’t be able to discuss medical procedures or know what kind of environmental access modifications are needed, so we can hope that parents will make sound and informed decisions on their child’s behalf. But as disabled children grow older, if they can communicate effectively in any way, then the primary goal should be to embrace the child’s form of communication, working with them to develop their own voice for advocacy. It can become problematic if parents or professionals are reluctant to relinquish their positions of authority and move to the role of advocate-allies, advocating alongside, instead of on behalf of, disabled people. Therefore, as important as it is to step up as advocates, it’s more important to know when to step down.

We receive wonderful stories about parents who have become seasoned and powerful advocates for their children. Now these parents are paying it forward by providing advice and information to others, developing advocacy study groups, or training parents, service providers, and educators in special education advocacy.

Every day individuals advocate on behalf of themselves or others to communicate needs, share experiences, and take steps to get what they want and need. The online Advocacy ATLAS is a toolkit created by Genetic Alliance, Parent to Parent USA, and Family Voices that provides individuals with special healthcare needs and their families with tools and strategies to advocate for whatever they may need. Resources are grouped by category on the Advocacy ATLAS landing page. Simply click one of the ten topic areas to get started browsing accessible tools!

The Individuals with Disabilities Education Act (IDEA) has been widely celebrated for providing millions of disabled children with broader educational and life opportunities. This Note seeks to improve the implementation of the IDEA by questioning one of its key assumptions: that parents possess the tools to advocate for their children in special education matters. This Note argues that many parents need assistance to achieve optimal outcomes for their children because of the complexity of both the disabilities involved and the formal rules of the system itself. Several policy options are considered in the hope that local educational agencies will implement pilot programs to further explore the issue of external advocacy in special education.

What: Training to develop leadership and advocacy skills   Who: For parents/caregivers of youth diagnosed with mental illness willing to use their new skills to advocate for children with mental health needs beyond the needs of their own child.  When: Starts: ~3:00pm, Friday June 11th till ~3:00pm Saturday 12th  Where: Fairmont Hot Springs by Anaconda  Why: There needs to be a parent/caregiver voice in the system of care for children’s mental health. Parents/caregivers that have been through the experience of raising a child with a mental illness are the experts in what treatments and services are effective for recovery. Therefore parents/caregivers are key to improvement of the SOC for mental illness. In order to get parent/caregiver voice into the system of care, a leadership and advocacy training will empower parents by giving them the tools and skills to be involved in the SOC. 

Thank you to the McCray, Fahey, Olko, Chavvaro and Gallagher families for sharing your experiences and participating in our new video about students with disabilities and self-advocacy!

Although there are a variety of school-based services available for children with learning, emotional, and social disabilities, one critical need often goes unfulfilled: providing guidance and strategies that instill self-advocacy.       Most students have only a superficial notion of the reasons they receive these special accommodations, and many children are completely uninformed. Resource teachers and specialists do not generally have the authority to label and enlighten students about their disabilities, the foundation for building self-advocacy. If children are to learn how to become better consumers of educational resources, especially as they grow older, someone must take the lead.      Parents of children with disabilities can fill this role by doing the following: Introduce children’s diagnoses to them in elementary school so that they can make sense out of their struggles Use a matter-of-fact tone of voice when explaining to children that they learn/behave/relate differently from other students and, therefore, need extra help to ensure that they can succeed just like their classmates Don’t leave out the disability label—such as writing disability, ADHD, or Aspergers Syndrome—since labels are a reality of their educational life Emphasize that the teachers and special staff at school who help them will be aware of this label and prepared to help in certain ways to make school a fairer place for them to learn and grow      It’s important to review with children the ways in which their school must provide special help and services. Emphasize that these accommodations are rules the school must follow. “You have the responsibility to do your best job, and teachers must follow the learning/behavior/friendship helping rules that make things fair for you,” is one way to put it. Explain how extra time on assessments, decreased homework, or social skills groups are examples of the helping rules that schools must follow. Discuss how there is a written promise called the individualized education plan (IEP), which includes all the helping rules and makes all of this clear.      Find child-friendly resources—such as books, websites, and videos—that explain in detail their specific disability and the ways other children have learned to cope and achieve despite these limitations. Use these materials as a springboard for deeper discussion about past times when their disability created significant stress or barriers to success. Reassure them that this was before their problem was known and that there is so much that can be done to build a plan for success now that it has been identified.      Point out that one of their most important responsibilities is to be able to discuss their disability with teachers and ask for extra help and accommodation when struggles are too great. Make sure that these discussions take place before middle school, when developmental factors make it harder to get such discussions started. Ensure that they know what practical steps are in their IEP at each grade so that they can respectfully remind teaching staff if necessary.      Having a disability is like having to wear glasses; students with glasses have accepted this fact as necessary to seeing clearly.

You can register online here!Your purchase includes one web access and one toll-free phone line for live 90-minute event, materials and unlimited access to Webinar archive. Gather a group in one location so many can participate for one low price!What:This webinar addresses the frequently confusing topic of student accommodations. Specifically, the presentation reveals how ambiguous accommodations can be - and how to select appropriate accommodations for each individual.The goal of this webinar is to present a model that can be used collaboratively by advocates, parents, students, and teachers to identify unambiguous accommodations. In preparation for the webinar, participants are requested to consider the commonly used accommodation "preferential seating." If you chose this for a student's IEP, exactly where should next year's teacher seat this child?   Time is provided for questions from participants.  When:Wednesday, March 14, 2012 12:00 to 1:30 PM MT Contact:The Advocacy Institute Phone: 540-364-0051 Email: info@advocacyinstitute.org

Click here to download the application (PDF) What: Training to develop leadership and advocacy skills Who: For parents/caregivers of youth diagnosed with mental illness willing to use their new skills to advocate for children with mental health needs beyond the needs of their own child.

Hopefully this web site will  help you  to quickly grasp the basics of the law, explain my understanding of the philosophy driving that law, and help you attain basic skills that will enable you to be an equal member of the team directing your child's education. From my experience as a parent of children with disabilities, from many years of working with educators, and from experience as a volunteer parent advocate, I have  a fair amount of insight into the education process, and the advocacy tools that work. 

The goal of iAdvocate is to share and develop specific strategies with parents for working collaboratively with a school team to improve their children’s education. iAdvocate uses problem-based learning strategies, simulations, and provides contextual access resources to build parental advocacy skills and knowledge.

Because the stakes are so high, it is difficult for parents of children with special educational needs to advocate calmly and objectively for the educational and related services their children need. Here are some common mistakes that undermine parents' ability to obtain appropriate services: