Susan's Blog

Thursday, May 6, 2010

What it takes

I have sent this letter out to my state reps and senator, to my US Rep and US Senators, too.  Feel free to adapt it to your child’s specific situation and send it to your government officials.  Just google them; they’re all online now.  Elected officials need specific, personal stories to make their case.  They want to hear from constituents.  Our emails and phone calls are their currency.  I have heard this time and again from the senators and reps I know here in Massachusetts — and I know a lot of them.  You should know yours, too.

All I’m asking is that you, my readers, keep housing for developmentally disabled adults on the front burner of our government’s priorities.  This is how you do it.  One email at a time.

Hello Senator____
Let me introduce myself.  I am the mother of three sons, the oldest of whom, Nat, is 20 and has fairly severe autism.  I have written two books about autism and many other pieces because it is just such an encompassing factor in my life. I love my sons, and Nat is a wonderful young man.

Now I am piecing together information so that I can secure Nat a safe and fulfilling homelife as an adult.  I am writing you with this issue in mind.

Nat currently lives at _____ and attends school there.  He comes home on the weekends.  Having him move out at 18 to live at his school nearly broke my heart but we had to do it, because of his aggressive behavior.  My 12 year old son Ben was terrified of him.  Anyway, Nat has improved SO much due to the round-the-clock efforts of the ___ staff.  He now holds 5 part-time jobs (two of which are at Papa Gino’s) and he still attends school.  He helps me when he’s home on the weekends, with food shopping, laundry, and housecleaning.  He is just a wonderful young man.  But he will never be fully independent.

I have spent most of this week meeting with all kinds of people about post-22 housing for Nat.  I have so far met with the Housing Authority president; with the Housing Advisory Committee head ___; with Combined Jewish Philanthropies, and one or two others active in Massachusetts affordable housing.

I also visited the ____Adult Residence housed in ___a few months back, which felt a lot like where Nat is living now __.  We love the level of care and attention Nat gets in the ___ residences.  I am thinking about the feasibility of perhaps through Project-Based Section 8’s and Massachusetts Residential funding for Nat, (not that Nat has gotten anything yet, because that can’t be known until he is 22) beginning a home for young men like Nat.

I want you to see what it is like for parents like me — and just imagine what it is like for parents who don’t have my energy and time (I work my own hours as a writer)!!

I am not panicking, but I am — shall we say — highly motivated and energized about his future!  I am asking you to do what you can to use your incredible energy and sharpness for the developmentally disabled populations, particularly the complex needs of the booming autistic population aging out of the public education system.  It feels pretty dire to most of us!

Let me know how I can help you in all of this advocacy.  I believe in you and in all of your excellent work in Congress.  I want to be able to continue that faith as Nat becomes an adult.

Thanks for listening,
Susan Senator


Thanks Susan! We all need to contact our legislators and share our stories. We also need to make them aware of efforts underway to examine the housing issue, such as the one in Arizona.

It would be wonderful to develop a national network of parents who are facing this issue now. Many adults with autism still live with their parents, due to a lack of viable housing options. Funding still plays a major role in the availability and quality of housing.

— added by Jane in Wisconsin on Friday, May 7, 2010 at 9:42 pm

If a parent does not get motivated as you are able to, where would a 22 year old young man with autism end up living, in Massachusetts? I’m curious because my husband and I always assume we’ll move up to NY or MA when our boys get older. I assume that the Northeast would have better services than Texas (before 22 that is definitely true, considering that we are on a nine year waiting list for any public help).
Nat is so lucky to have you!

— added by Alice on Saturday, May 8, 2010 at 12:01 am