The ICAA vision was born as a result of advocating for my own child, and our family’s experiences. Of course, my husband and I were thrust into finding out through glaring reality how things work in various systems, and the supports or lack thereof in our current society. We learned firsthand as parents and advocates what needs to improve, what is working and what is missing for people with Autism and different abilities in our communities. We understand the sacrifices, hard work and challenges families like ours face. Each day, I come across another heartbreaking story of good, smart people being left behind, or dealing with truly unjust systems.
After seeing what needs to change and becoming active in advocacy, we reached out to some talented, smart, professional, caring people in the community who wanted to join us. These people are working continuously with us to implement the vision of ICAA. Words fail to express how important it is for ICAA to have such great people on board who believe in the mission and goals for this organization.
Together we can make a difference but we need your voices too. Every parent, self advocate, sibling, caretaker and educator has run across challenges, positive supports or systems, and has something to share as a result. We need to hear from you. What have you faced and what are you currently confronting in the realm of Autism and disability issues? We need to share our strengths but to also learn what needs to change and organize to get things done together.
Our organization hopes to empower and unite all advocates. Together we can make sure all people, regardless of ability, and their interests are represented. In many systems throughout our society, people are left out of agendas, conversations, and activities. Decisions are made every day without any knowledge or understanding of what people on the spectrum need, or what people with learning differences, intellectual disabilities, or physical impairments need. Let’s make sure this changes.
I have seen for myself how even the smallest act of a phone call or e-mail makes a huge difference in an important outcome for justice. Please make sure that when you take action in action alerts, you tell anyone and everyone you can to join in as well.
Now is a great time to kindly encourage our public officials to include the interests of those with disabilities into the conversation about education. Our public schools are being examined right now. Our leaders are asking what needs to be reformed and what needs to remain the same. Don’t leave it up to them alone to decide what happens! Let’s join the conversation. Even after IDEA, ADA, and NCLB, students with disabilities have been left out of the conversation and the agenda altogether. For too long, our children, brothers and sisters, even if they were gifted students, were shoved into basements, separate buildings, or back rooms within the public schools. This has been referred to as “special education”, though this is not what the law means when it references “special education”* .
Many well meaning people, not knowing any better, went along with it and felt that this was equality, inclusion, and as good as it was to get for these kids. Although many people are starting to get educated and enlightened regarding the rights and realities of people with differences, there are still many challenges to overcome. The education arena is one place we need to start as advocates, activists, parents and concerned citizens. Public education is a gift that we should never take for granted and never allow to become an inferior system. Let it remain a strong foundation of hope for all communities, and for all people regardless of culture, ability, creed, race, income or other difference.
As many of you know, health insurance plans have been discriminating against people with Autism for a long time. Regardless of what you pay for coverage, chances are you have learned that your son, daughter, sister, brother, yourself or your dependent cannot access, or has had severely limited access to supports such as occupational therapy coverage, speech and language, or other effective and needed therapies for people on the Autism spectrum. We have been told that Occupational therapy would be covered only if there was a physical disability, if there was an incident of stroke, car accident, or other problem that caused a physical disability, or if someone was born with a physical, recognized disability. Despite the fact that these therapies are often crucial to a person’s prognosis in life (ie: will the person develop communication, social skills, improved comprehension, improved behaviors, sensory integration, feeding,fine and gross motor skills, education and developmental skills, or will he or she flounder and be kept from reaching their fullest potential in a safe, proven effective manner?) many insurance companies still believe it is cost effective and acceptable practice to discriminate and deny needed supports or interventions, based on a person’s disability*.
Some have been told by insurance reps that Autism is a “mental illness” and therefore will not be covered. As flawed as the Missouri legislation that has passed may be*, it is a step in the right direction. I was able to talk to many people who worked to stop this bill, and to work with great leaders who stood up and pushed forward even when it looked like a bigger challenge than first realized.
If our public officials had not heard from advocates like you, it is quite possible there would have been no change at all. Every time I was in our state’s capital, I saw parents, self advocates and others knocking on doors, and walking the halls of the capitol building. We need advocates like you every day.
Our children, brothers, sisters, students and neighborhoods depend on you speaking up and stepping up.
We all get tired. When your child has challenges, meltdowns, or problems that many in the general public don’t yet understand, it can feel like a near impossible task to get up and get out, but we must!
I will be traveling to the capital again in the coming months. I intend to continue visiting with leaders every year regarding the rights and needs of people with disabilities throughout all environments of society.
I look forward to many advocates joining me in these efforts. I want to encourage all advocates to seek ways in your local area to get out there and take a step forward to make things better.
If you need help, support, or ideas, don’t hesitate to contact us.
ICAA is working hard to ensure the opening of our HUB happens this spring. The HUB will be our central location for all projects, leading with Project Hope. Project Hope will sponsor free, family friendly support meet-ups for St. Louis county and surrounding areas. We will also be seeking ways to gather equipment, and other relevant goods and supplies to distribute to families in need in the area. We will be working with therapy providers in the area to ensure services and supports are accessible to local families. Our advocacy services and other information will also be available at the HUB. If you or someone you know is interested in working with us on Project Hope or you would like more information, please contact us.
Our world depends on good people standing up and stepping forward to ensure positive changes and growth. When it gets hard, we need to stand together and share our strengths.
Your one e-mail, phone call, fax, or letter can change a life! It has happened with people in school settings, legal issues, community issues, and health care situations. It has even helped shape legislation!
Let’s keep up the good work, friends!
With love and hope,
* Special Education law is of the utmost importance to all advocates, parents and educators. I suggest interested people look to ICAA Radio archived podcasts with Mark Kamleiter, Esq., as well as Wrightslaw books, blogs and websites related to special education law and what special education means.
* “with Autism”, “Autistic”, and “on the spectrum” are all ways in which different advocates prefer to address themselves or others. I respect everyone’s right to their own preference. Some self advocates do not like to say “with Autism” as they do not like to refer to autism as a disease or an appendage that can be removed from a person. Others feel that saying “person with Autism” puts the person first and is more respectful. I wrote about the possibility of getting lost in the fight over words once for a panel on Autism issues. I understand that words are important and that everyone has preferences, and a right to them, so in my writing I will generally use more than one way.
* I vacillate between the use of the terms “disability” and “different ability”. Again, words matter, especially in the law. Legally, people with Autism and other differences have “disabilities” and are entitled to certain rights, protections and supports. Disabilities present certain challenges and disadvantages in our current society and laws such as the ADA and IDEA were written by people who understood this. However, the people we meet and work with who are on the spectrum, hearing impaired or otherwise, are not “lacking” in “ability” overall, or potential, so I will often, in order to be inclusive and to illustrate the ICAA message of acceptance, inclusion and respect, use the term “different abilities” or “all abilities” as well as the legally recognized “disability”.
* the main problem I have with the law is the “age limits”. Autism does not disappear at adulthood, and no one should be led to believe that it does. Insurance companies and others should not be encouraged to further discriminate or have the right to cut off any needed supports or services to a person of a certain age with a specific disability. It is a disservice to our society as a whole to allow this but I do appreciate and understand the legislation, and I know we can as a country, constantly improve. It will always remain up to us as advocates to ensure changes that are made are actual improvements.