Susan's Blog

Tuesday, February 22, 2011

Penny Foolish and Pound Cruel

A new era has begun for me.  All the past years I’ve been going to these state hearings on proposed cuts to special education in Massachusetts.  I’ve been one parent out of many parents, professionals, and students protesting cuts to programs that have never been fully funded to begin with.  But today I testified at a state hearing on Massachusetts’ proposed cuts to the Adult Foster Care program (AFC), the first time I’ve spoken as a parent on Nat’s behalf — for his adulthood.

I’ve written recently about the AFC program, which is funded through MassHealth and Medicaid, about how this program is part of the new movement to keep those with disabilities in their communities and homes, rather than sending them to nursing homes and institutions.  The part AFC plays is that it provides a small stipend to a caregiver (usually a parent, a foster parent, or a hired caregiver) to live in the home of the disabled person 24 hours, 7 days a week.  For a Level I case, someone who needs prompts to do almost anything and who needs supervision at all times (Nat is a Level I), the stipend is about $9,000 a year, which when broken down comes to $2.07 an hour.  This is the program that Massachusetts feels it must make a 6.2% cut to.

Have you ever tried to hire someone for $2.07 an hour?  I couldn’t even get my neighbor’s 5th grader to water my plants for that.  Imagine trying to hire someone professional enough to care for Nat in all his glory for that pittance.  Or, consider that this money would be to substitute for my salary as an adjunct professor.  Or, if I could not care for Nat, then this stipend would be for Ned, currently a software engineer supporting a family of five, who would have to leave his job or reduce his hours.  And we are people who are doing well enough, with savings, etc.  What are the people who work two jobs to survive supposed to do to support their disabled loved ones?

Institutions, you may say.  Well, you would be totally wrong.  Speaker after speaker from different agencies that administer AFC programs — about 120 people filled that room — reported the comparative figures, of nursing home care vs. AFC.  Basically, nursing home and institutional care cost twice as much per person as the AFC program.  Institutions are becoming a thing of the past, a former era of relegating of individuals with disabilities to the margins, the dingy basement rooms, the closets, the attics of the world. Custom Cabinets Houston will offer beautiful creative solutions and make any place brighter and more comfortable.

Damnit, I am not going to let that happen to Nat and his friends.  22 years of hard work in school, all those resources and teachers’ energy going into helping him become a person in the world, an individual in his own right, someone who works, who is a team player, and who brightens people’s days with his sunny face.  Someone who, prior to his intensive residential education, was at times so destabilized by his environment that he became violent.  This created an unhealthy home for my family, including Nat, and especially Ben, my youngest.  Imagine growing up, tiny toddler with an out-of-control brother that even your all powerful parents could do nothing about.  What does that do to a person’s view of the world, ability to trust, to manage fear?

What does it do for Nat, who is also a person who deserves to survive in this world when I am gone.  Families with disabled loved ones need support, or they stand to fall apart.  And then who cares for them, who picks up the pieces?  Get a good look at some of the street people you see, wandering around dirty and uncared for, talking to themselves…  what is their story?  What is their diagnosis, do you think?

I told these state officials that parents of 21 year olds like me are terrified of what comes next.  They had a support system in public education, professionals to help and educate, however imperfect it was.  Adult services should not feel like you are on the edge of a terrible precipice.  A program like AFC — as little money as it is — still allows people to continue making progress in their homes or in Nat’s case, with other roommates sharing the one caregiver in an apartment of their own.  I told these folks:  “Don’t do this.  It is penny foolish and pound cruel.”


Penny foolish and pound cruel – great phrase. I hope it hit a few of them.

They would rather spend money on war. They could find a lot more money for domestic programs if they would 1) end the useless losing wars and 2) cut corporate welfare, aka tax breaks for the rich and for big businesses. But they never will.
They are busy demonizing state workers when it is the “best and brightest” on Wall street that plunged Western economies into this mess, and politicians listen to them.
Then they balance the budget on the backs of people who cannot survive without assistance.
Just watch: even the wonderful (compared to post 21) services provided to children birth through 21 will get cut. The politicians who have special needs children have plenty of money and will never have to face these worries, so they will never support other parents – that would be socialism after all, horrors!

— added by S on Tuesday, February 22, 2011 at 1:26 pm

And what is going to happen to all of these recently diagnosed children when they become of age? I try to imagine it, then have to stop. It’s too painful.

One day at a time.

— added by Ed P. on Tuesday, February 22, 2011 at 1:35 pm

I know, Ed, it is a crisis in the making. We have to raise taxes (for the wealthy, the corporations, the oil companies, Wall St.), not make budget cuts.

— added by Susan Senator on Tuesday, February 22, 2011 at 1:43 pm

[…] This post was mentioned on Twitter by Alltop Autism, Susan. Susan said: Today I testified @ a #Massachusetts state hearing against cuts proposed to the #AFC program. #disability […]

— added by Tweets that mention Penny Foolish and Pound Cruel « Susan's Blog -- on Tuesday, February 22, 2011 at 2:30 pm

There are those that still think that institutions are the way to go. Having watched my grandparents in those lovely facilities – and good ones at that – the idea makes me cringe. Each option has their pros and cons, but I don’t want mine in a facility like that. Not that Ontario has them anymore for the disabled, which is one of the problems we have with care after 21. It’s currently approx a 10yr wait for placement.

I admit I’m trying to advoid thinking about it until we reach highschool. Best of luck, all you can do is try. But it still amazes me the number of parents that don’t. My youngest’s Gr 2 teacher and I were talking at the mall last week and she’s got about 5 of them in her classroom. They are falling far behind, the parents expect the school to fix it… I wasn’t sympathetic, she was surprised.

I think those that push, that fight, that work at it daily should always be first. If you can’t be bothered, than why should someone get those few services without battling the system, when you had to fight constantly for them. Harsh…. probably.

Hopefully, they remove the cuts from the budget and you find Nat a place of his own.

— added by farmwifetwo on Tuesday, February 22, 2011 at 2:53 pm

$2.07 an hour. OMG, what a damn disgrace.

Good for you for speaking out on this. Keep us posted.

— added by Melissa on Tuesday, February 22, 2011 at 9:58 pm

yeah that won’t even buy you a cup of coffee at starbucks….geeez 🙁

— added by Eileen from Florida on Wednesday, February 23, 2011 at 9:19 am

Whatever happened to President Kennedy’s initiative to close mental institutions and fund community care centers, dayhabs and group homes? I heard somewhere that the money somehow got diverted after Kennedy’s death into funding the Vietnam War,
It’s out of sight out of mind for many of us who don’t have a loved one who needs they kind of services that Nat does. Having taught autistic teenagers I know how their parents worry about the future. It’s not right that our society is so cruel to those who are perceived as worthless. You have a right to be angry. How anyone could possibly think that $2.07 an hour is an appropriate wage for any kind of job let alone an extremely challenging one?

— added by Sunni on Thursday, February 24, 2011 at 11:08 am

Here is a description of the dire situation with budget cuts in CA, for children below age 21:
(Read the post of Sat Feb 19th)

— added by S on Friday, February 25, 2011 at 9:15 pm

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