Episode 15 Show Notes

Hey, there everyone. It’s Sophilia Lark-Woodbury, and this is episode 15 of the S.O.S. podcast.

Today is Friday, March 2nd 2018, and we are going to jump into some advocacy essentials for

personal empowerment as you work to be the best change agent for your child. When I started

my journey as a mom of a child on the autism spectrum, I was like all those other mothers who

had come before me – lost, confused, and unsure of what to do next. There was no “one-stop

shop” to which people could easily point and say, “Go there, they can help get you started.”

 This was my biggest frustration, and as I began to find my tribe and talk with other

mothers who had gone through similar struggles, I realized that not only was this a

problem, but that there was a need to create a place to which people could point and

say, “Go there, they can help get you started.”

 Today, I’m going to share with you my top 10 advocacy tools for personal

empowerment and change.

 When I began gathering advocacy resources to share with others, I considered the

common themes and questions that moms/parents raised when searching for

appropriate resources to meet their family’s needs.

 These included information about diagnostic evaluations, educational rights, family

tools to deal with home behaviors (e.g., potty training, tantrums, communication, etc.),

how to find the best treatments (e.g., Speech, OT, PT, feeding interventions, sleep

consultations, behavioral therapies), Community integration opportunities, self-

care/respite.
  The top 10 tools I’m going to share today will help you get started and give you

confidence to advocate for your child.

 So, let’s get started.

 The first thing that I would encourage any parent of a special needs child to do is

become familiar with the state and federal laws that govern special education and

disability rights.

Federal Disability Laws

 The primary federal laws are IDEA (Individuals with Disabilities Education Act), ADA

(Americans with Disabilities Act), and the Rehabilitation Act of 1973. You can also add

the Civil Rights Act of 1964, which covers public accommodation laws.

 I’ll focus briefly on IDEA as this is where many parents of children 3-21 tend to focus.

 IDEA is a federal law that ensures students with a disability are provided a Free

Appropriate Public Education (FAPE) that is tailored to their individual needs.

 This is accomplished primarily through the IEP process.

 IEP identifies particular services to be provided and how they will be measured,

including the frequency, duration, and methods used to provide the services.

 IEP also specifies accommodations and modifications provide to the student.

 IDEA also covers 5 other components: FAPE – it is important for parents to know that

FAPE means that special education and related services must be provided at the public’s

expense, in accordance with the IEP, and must result in educational benefit to the child.

LRE (Least Restrictive Environment) – an environment most like that of typical children
 where the child can have access to challenging/rewarding educational opportunities

unless the child’s disability severely interferes with learning such that the use of

supplementary aids and services cannot be achieved satisfactorily. Appropriate

Evaluation – children are placed in special education services only after they have been

formally evaluated. This is done via a variety of assessment tools. Parent-Teacher

participation – parents and teachers need to work together to design the child’s IEP. See

“Emotions to Advocacy” guidebook by Pam and Peter Wright (Wrightslaw.com).

Procedural safeguards – the law affords specific rights to disabled children and their

families regarding the child’s education. These include:

 Access to educational records

 Parent Participation (In any and all meetings regarding placement and educational

decisions)

 Prior Written Notice (Anytime anything will be changed in a student’s IEP their parents

must first be notified)

 Procedural Safeguards Notice (A written copy should be provided to parents under

federal and state law)

 Understandable language (Translators must be provided when needed)

 Informed Consent (Before any evaluations or services are provided the student’s

parents must be informed and agree in writing before the school can move forward)

 “Stay Put” Rights (If parents disagree with the school’s decision the student can stay put

while the parents and school go through dispute resolution)

  Due Process (If a parent has a dispute with the school about their student’s special

education placement or teaching a process called due process is used to resolve issues;

both parties are then able to tell their sides of the story in a court like setting)

 Civil Action (If due process results are not to the liking of the parent or the school a civil

lawsuit can be filed)

 Mediation (An alternative to due process hearings)

Special Education Toolkit for Parents

https://www.pta.org/home/family-resources/Special-Education-Toolkit

Provides information for parents on how to get the best special education, services, and

resources to promote their child’s development and independence. You’ll find answers on how

to get started with advocacy, how to implement transition planning, and how to access and

utilize state and federal policies.

Wright’s Law

http://www.wrightslaw.com/#education

Is one of the best websites in the world in providing a legal perspective about special education

law and recent court cases that detail rulings regarding the violation of special education law. I

have benefitted from resources that helped me to plan for and effectively navigate IEP

meetings. A couple of invaluable resources that particularly pertain to the IEP process include,

“From Emotions to Advocacy,” and “All about IEPs.” These books can put you ahead of most
parents who often walk in blindly to the IEP process not knowing their rights and the law

regarding their child’s education.

TASH (The Association for Persons with Severe Handicaps)

https://tash.org/about/

Is a non-profit organization that advocates for the equity, opportunities, social justice, and civil

rights of individuals with severe disabilities. Their work is aimed at promoting full inclusion of

disabled individuals into the community and to eradicate social injustices that diminish human

rights.

“The focus of TASH is supporting those people with significant disabilities and support needs

who are most at risk for being excluded from society; perceived by traditional service systems

as most challenging; most likely to have their rights abridged; most likely to be at risk for living,

working, playing and learning in segregated environments; least likely to have the tools and

opportunities necessary to advocate on their behalf; and are most likely to need ongoing,

individualized supports to participate in inclusive communities and enjoy a quality of life similar

to that available to all people.”

Autism Speaks Resource Guide

https://www.autismspeaks.org/family-services/resource-guide

An online resource to help families identify services and treatments in their local area. You just

select the state you live in and press submit. From there, you will receive a list of all the

available services and supports that may be applicable to your situation.

Autism Society of America

http://www.autism-society.org/about-the-autism-society/

Is described as the “leading source of trusted and reliable information about autism.” Founded

by Dr. Ruth Sullivan and other parents of children on the autism spectrum, the non-profit

organization provides information on trainings, national conferences, research and statistics,

and other services that help families and children to thrive.

The Autism National Committee

http://autcom.org/about.html

A non-profit organization that advocates for the human and civil rights of persons with autism.

Specific focus is on elimination social policies of devaluation where individuals are subjected to

various forms of abuse that may result in serious injury or death. This includes banning the use

of aversive restraints, seclusion techniques, and other forms of abuse such as ignoring a

person’s needs.

Autism Speaks Toolkits

https://www.autismspeaks.org/family-services/tool-kits

I especially love what Autism Speaks has done here in making it easy for parents to have a

starting place in finding appropriate resources for their child. They have put together several

parent toolkits including the advocacy kit to help families get the best possible outcomes.
Partners in Policy Making

http://mn.gov/mnddc/pipm/

Online and face-to-face leadership training for parents of children with disabilities and people

with disabilities. The training focuses on resource development and how to communicate with

public officials in order to impact legislature and create change for better treatment and living

standards of people with disabilities.

Wellness Recovery Action Plan (WRAP)

http://mentalhealthrecovery.com/wrap-is/

A self-determined health recovery plan developed by Dr. Mary Ellen Copeland that targets

wellness in various life domains. It places self-care front and center as you work to identify the

ways you cope best, to create a support network, to create a plan for healthy daily activity, and

to develop a plan for how you will handle crises and recovery.

 I have used most of these tools countless times along with other resources such as Dr.

Areva Martin’s book “The Everyday Advocate.”

 These tools position you as not only the expert on your child’s life, but also as a leading

authority on communication, working together, and seeing issues from the perspective

of individuals who are unlike ourselves.

 Okay, so next week should be a fun one because I am going to share how you can stay

motivated on your journey to become an empowered change agent and self-healer.

 Looking forward to it. See you later.