Susan's Blog

Saturday, November 19, 2011

Use this post to write your Congressmen

Okay, now it is time for a little bit of politics. With the Supercommittee about to act — or not — either way they are taking action — it is time to weigh in with our senators and reps.  Here is how you email your own senators and reps. And here, below, is a template that you all may use. You may not believe it, but I know for a fact that senators and reps take these emails, letters, and phone calls to sessions and show the others what their constituents have told them!  Your letter will help. Just cut and paste mine and substitute your own stories.

Dear Senator Brown,
I am the mother of a 22 year old lovely but challenged young man with fairly severe autism. I have published several books helping parents who live with autism. But now that Nat is 22 and in the adult system, I see once again that we need so much help just to keep our families together. Autism is so complex.

One of our country’s blessings is our human services. Let’s take Medicaid as an example, because I have firsthand experience with that program.  As you know, here in Massachusetts, Medicaid funds DayHabs for many, including folks like my son. Though far from perfect, these DayHabs give support and therapies during the day for so many adults with developmental disabilities.  Without the DayHabs, which run usually 9-3 M-F, there would be nothing for these people. Nothing. With so many having been educated with our public school system (also far from perfect, but lightyears beyond what the disabled used to have — Nothing) isn’t it a profound waste of human potential to let these people just languish for the rest of their lives, doing nothing and living in their aging parents’ homes — and that’s only the lucky ones who have parents up to the task.  Autism sometimes comes with difficult behaviors (my own son, whom I love with all my heart, just this morning bit his own arm out of frustration with the world…)

I want to invite you to come with me to my son’s DayHab in Wellesley, Autism Services Association. There you will find one of the top-notch DayHabs, and yet you will also observe the shoestring budget they run on. There is no fat to trim. Not with level funding for all these years.

Senator Brown, Medicaid is not the place to experiment with deficit reduction. As unpleasant as it is, we all know that revenue to pay to run this country comes from taxes. Please look to the wealthiest in this country first, before looking at the poorest and most vulnerable. Medicaid helps the most vulnerable. Come with me and see for yourself. I will make time in my very full schedule if you will in yours. Please come; lunch is on me! –Susan Senator, [my address and phone number]


Hello Susan,

While you are lunching with Senator Brown, I have a modest proposal I would invite you to share.

— added by Sarah on Sunday, November 20, 2011 at 12:18 pm


I am a single mom. My son with ASD is 14, and I anticipate with pleasure the idea of him having the option of living with me as an adult–just as the grown up neurotypical sons and daughters often more back during hard times. Of course, I hope he will continue to build skills which will possibly give him the option of living away as well.

So let’s think of micro home-based businesses, e.g. an urban microfarm if your lot is large and you’d love to raise very locally grown vegies for the neighbors, a micro B and B of a single room or two where DS or DS can help cook up and serve breakfast–all the while improving work skills and enjoying life and the increased socialization that goes with any business and saving the parents from dealing with bureaucratic complications.

So, say, Senator Brown, how drafting a bill for a tax break of 5 or 10 grand or so to help us 99% with our own tiny start ups–help improve your tax base when we do turn a profit while improving quality of life for ASD families who want to do something like this?

— added by Sarah on Sunday, November 20, 2011 at 12:31 pm

Love it! Will share if it happens! Meanwhile, did you send this to him? I hope so!

— added by Susan Senator on Sunday, November 20, 2011 at 12:35 pm

Hi Susan!
I am ordering your Survival Guide tomorrow once my new Kindle Fire gets in. I can’t wait to share it with my clients!
One of the greatest challenges I am facing with my clients who are 22+ is trying to get back the services they had that insurance covered up until that “magical” age. At 22 the child “ages out” of the school system, and Voc Rehab isn’t carrying their weight as part of the DOE. Ontop of that, medicare “drops” services at age 21. Why is it that “the powers that be” assume that the needs disappear at adulthood?
The same problem arises with SSI benefits and clients having to be re-determined at 18. And guardianship having to be established at the same age. For many of my clients, hiring a lawyer and paying thousands of dollars to prove that an individual is not competent is just not a viable option…
Anyways, its so great to see you sharing your experiences and helping others out.
Tell Nat and the boys I said hello! I am honored to have had the chance to work with your family! My contact info hasn’t changed, if you ever need anything please don’t hesitate to contact me!
Sean M.

— added by sean m on Monday, November 21, 2011 at 7:57 pm

Sean, it is so good to hear from you! I feel so proud that we had a part in your career; it sounds like you are doing a lot of good out there for families like mine. Lots of love to you and your family. –Susan

— added by Susan Senator on Monday, November 21, 2011 at 11:01 pm

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