Susan's Blog

Monday, December 5, 2011

My letter in today’s Boston Globe

Last week I wrote this letter to the Editors of the Boston Globe concerning the importance of Medicaid.  Today it was printed:

To the Editors:

THANK YOU for the strong message about the dangers of turning Medicaid over to states and block grants ( “Medicaid has a problem, but block grants won’t solve it,’’ Editorial, Nov. 25). The Republican sound bites about the waste in the Medicaid system are often based on political motives, not fact.

As the mother of a young adult with autism, I depend on Medicaid to fund my son’s day program. I would invite any political candidate to visit one the state’s programs and look at what they do on spare budgets. Look at the remarkable ingenuity of programs that provide entire crews of unpaid volunteers to work for valuable businesses like Meals on Wheels.

Anecdotes on waste should not indict an entire support system. Nor should quality vary so much between states, as it would under the block grant proposals. Though far from perfect, Medicaid is the only thing standing between so many disabled people and a wasted life in aging parents’ homes – or even a life on the streets.

Susan Senator


well said, Susan. Thank you for writing it and bringing up great points.

— added by steph t on Monday, December 5, 2011 at 3:51 pm

Why does it constantly have to be a struggle. Why, the little bit of help, the little bit of peace of mind, the little bit of hope always have to be tugged on, threatened, made to have you feel soo thankful for it.
Halliburton. Do those pieces of $%&* feel grateful for every %&*# million dollars the government give them? For each of the %&*# special intrests (tobacco, pharmaceutical, oil), are they made to grovel and shout, thank you sir, may I have another?
HATE those who govern from their mansions sometimes. They really should make a point of coming down off the mountain once in a while. Then again, we may chase them around with a stick.

— added by Jacquie on Wednesday, December 7, 2011 at 7:53 am

Thank you, Jacquie. So true.

— added by Susan Senator on Wednesday, December 7, 2011 at 8:04 am

Absolutely correct! I know a few Republican minded who believe parents should bare the entire financial responsibility of caring for their disabled children’s education and adult care. I’d like to see those same people feel that way if they were in our shoes.

— added by Sherry Rubin on Wednesday, December 7, 2011 at 10:27 am

I am an “aging,” 71 y/o parent living with an Autistic son and his life is not “wasted”–nor is mine.

— added by Sarah on Wednesday, December 7, 2011 at 2:39 pm

That is good to hear. Not all of us can handle the needs of our children with autism once they are grown up. And certainly many many of us worry about what happens when we are gone. I hope that you have figured that part out, too.

— added by Susan Senator on Wednesday, December 7, 2011 at 2:45 pm

The assumption that living with an old person means a wasted life is agism.

My son is becoming a capable young man. If he continues to progress as he has in the past he may have a job. Since, he wants to climb mountains, if he is able, he may want a cheap home base anyway so he can pay his Sherpas instead of his mortgage.

If he still needs support when I am in my eighties or nineties, we may be able to afford a person to come in and help us both out some–certainly more affordable and congenial than hiring two strangers in two locations.

Of course, if he is able and wants to and has a good enough job to pay for it, he will have the option of striking out on his own.

When I die, he will inherit our little house in the neighborhood he loves around folks who know him. Most likely he will continue to play in a community orchestra and kick butt in kickboxing classes at corner Y. He will possibly take on a roommate for income, or perhaps marry if that is in the cards, or take a lover. Or?. . . If. If. If. . . .

I am not against having help from the public coffers. But the coffers being what they are and the public being what it is, I need to imagine other options.

Clearly, different folks have different needs. But to assume that living with an old parent may mean a wasted a life shows a lack of respect for us old folks and a discounting of what may be promising options for some disabled adults.

— added by Sarah on Wednesday, December 7, 2011 at 4:19 pm


As I’ve said, I’m glad for you. He sounds like he’s doing well and that you both enjoy each other. It’s also clear that he is very capable and that he and you are very fortunate, and are role models in terms of the many options out there. However, I don’t believe that what I’m saying is ageism. I am not assuming anything about living with an old parent; I am thinking of those “old parents” who cannot do what you do, and I’m clearly not talking about all elderly or all those with autism. I’m thinking of the many autism parents who have already found they cannot take care of their autistic child. Many will not inherit a little house in a good neighborhood and a way to support themselves. I am therefore giving a voice to those who need the Medicaid and other programs, and I would hope that you would support that for those who need it, too.

Keep up the good work!

— added by Susan Senator on Wednesday, December 7, 2011 at 4:27 pm

i typed up a huge comment this afternoon. did it get lost in cyberspace or was it deleted as most of my comments are?

— added by steve horton on Thursday, December 8, 2011 at 8:22 pm

It’s there, Steve.

— added by Susan Senator on Thursday, December 8, 2011 at 8:25 pm

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