As parents of children with autism, we are by definition, advocates.  Why not take your advocacy efforts further to help others?  You don’t have to be noisy and confrontational.  Communication and relationship-building seem to work much better for me anyhow. 

Schedule a meeting with school administrators to let them know how things are going and to share your ideas – they’ll love to hear from you.  Write a letter to your newspaper talking about what you think should be changed (like removing the R word) or why you think your child’s school district deserves a pat on the back. Schedule a meeting with your local legislators, and let them know how you feel about current policy related to people with autism, or just to tell your story.  You may not get to speak with Senator so-and-so or Governor whosit, but you will most certainly get to speak to someone on staff.  It’s true!  I always thought that I’d have to be a big-time lobbyist to speak with anyone in office, but that simply isn’t the case.  Some lobbyists have already worn out their welcome, so a real constituent is like a breath of fresh air. If you are too shy or too busy to meet in person, send an email or make a phone call.

Most of all, be there for other parents.  You’ve learned a lot, now share it with other parents who are just beginning their journey up Mt. Autism. You can sign up to be a parent mentor through a number of different organizations.  Call your state’s Department of Mental Health or ARC to see how you can help.  Or simply go to your  childrens’ parent-teacher organization meetings.  Supporting your child’s school is  a great way to meet new people and to gently make them aware of the sensitivities related to autism spectrum disorders.

And, if you have something you’d like to say, send your comments my way, and I’ll do my best to post them. 

Advocacy Corner

On the Need for Autism Spectrum Diagnosis and Healthcare Coverage–

From John “Hai”
I still didn’t know the word Aspergers, but knew I was different – I just didn’t know what was causing it. In December of 1985 I saw a psychiatrist to try to find out.  I didn’t get very far because the insurance company refused to pay for it and the clinic didn’t take IOU’s. FINANCIAL BARRIERS = HEALTHCARE CRISIS. This is another example of our need for a fair distribution system of healthcare. The doctor prescribed expensive psychological testing; but I couldn’t get it done due to the financial barrier. While I am no longer the biggest believer in psychiatry, the doctor I saw may have been able to find out what it was and what I could have done about it; maybe things could have been done without regards to whether the insurance company will pay for it or I can pay for it.

Not being able to fund the screenings I have coped best I knew how, including having had a 9 year successful career. But now it is over. Where do I go next? Apparently needing help to compete in the job market, I went to Voc Rehab or “Vocational Rehabilitation.” Now, Voc Rehab is paying for expensive tests that the psychiatrist previously wanted to run. Hopefully Voc Rehab can help place me onto a job that pays a living wage and medical insurance benefit. If they continue to be unable to get me place in a job they may have to declare me disabled; that is not what I have in mind; I don’t think that is what you want either. Do you want me living off your taxes?

Thirty Minutes of Advocacy

by Mae…

If you think advocacy is time-consuming or scary,  check out what a mere 30 minutes can accomplish. It doesn’t take a long time to make a big difference. You can do it, too! 

1 minute. Read an email from a local autism advocacy organization providing suggestions for how to support pending state legislation for autism insurance coverage.

1 minute.  Followed link in Advocacy Alert above email to answer online questionnaire from local newspaper about why autism insurance coverage is so important.

5 minutes. Wrote my state senator an email thanking him for supporting autism insurance legislation. Used template supplied by above advocacy organization, but modified  the letter to be a  thank you for existing sponsorship of the bill vs. requesting support for it. Clicked on our state government site to find senator’s email, then copied and pasted my message into it.

5 minutes. Wrote my state representativean email requesting support of insurance legislation.  Had to double check with Postal Service my extended zip code so that I could confirm my state representative’s name for my area. Clicked back to state government site to find state representative’s email address. Used same template as above to send email.

15 minutes. Continued internet search for local advocacy group on the issue of ‘crowd out’ factor by Medicaid on private insurance. Read abstracts of papers from Brookings, Urban Center and other brilliant organizations who are diligently working on this subject. Emailed bibliography of articles to local advocacy chapter head. Bookmarked articles to read in full later.

1 minute. Read an email from a mom who was distressed about changes to her son’s placement.

1 minute. Returned email to same mom requesting time to meet to discuss/mentor mom.

1 minute. Confirmed time with mom to meet for dinner that night to discuss her son’s situation and rights under IDEA.