Susan's Blog

Wednesday, September 9, 2009

Who Cares?

If I were the king of the world, I tell you what I’d do: I would pay caregivers/service providers a lot more money. Any kind of caregivers. Babysitters. Daycare providers. Teachers. Aides. Nurses. They should earn in the same ranges as CEOs, rock stars, and ballplayers. They should earn more than CEOs, rock stars and ballplayers. It just doesn’t make sense, that those who need care, are given the least of it. In schools, paraprofessionals work with the most complicated kids while someone highly qualified consults or oversees. In group homes for disabled people, the direct caregivers are those who really need a job and may not necessarily want to work in that profession. They may be underpaid, undertrained, and unmotivated: a perfect storm of Un-care, or care-lessness. It’s like the Woody Allen movie, Sleeper, where the scientist says, “It’s precisely the opposite of what we now know to be true;” it is the exact opposite of what it should be. Ballplayers. Ballplayers! And rock stars! “Any jerk with a guitar can be a star these days,” is what my mom used to say.

It’s because it’s not glamorous to care for others. Unless you have a flying umbrella that talks and you can jump into your chalk drawings on the sidewalk, you had better be ready to be shat upon. Sometimes literally.

How do I make disability glamorous? How can I make people notice and not look away or deride? How can I make people care?

Again, what is at the bottom of this is that people are attention-limited and they cannot devote energy to too many causes. It’s true: while I spend a LOT of time reading and thinking and writing about disability/autism there are many other worthy causes I don’t even glance at int he papers. I did not listen to Obama’s speech on education. I barely know about the floggings in the Sudan. And I call myself a caring person.

I had coffee with a director of a large charitable organization today, which contributes a lot to disability quality of life projects, and the news was not good. The money is just not there like it used to be. So the care will be even more spare. How is that okay? And later on, I had a meeting with our Department of Disability Services liaison, and again I heard that this was the worst year for funding in the 18 years that she has been working for the state of Massachusetts.

I drive through poorer sections of Boston, or walk around New York, and I see the disabled and the homeless, bent, staggering, ragged, in wheelchairs on corners with boxes and hand-lettered signs that ask for help. I pretty much always help them. I roll down my window and slip them a dollar or a five. I have been blessed by some of them for this, and that embarrasses me. I do this because I figure that’s where money really ought to go. I think, like Melanie Wilkes, who tirelessly tends to the ravaged soldiers that make their way past Tara: “One of them could be Natty. They could all be Natty.” There but for the grace of God. And funding.


Thanks Susan, for saying what I have wanted to for years! Well said! Maybe change will come with the higher demand for help…let's hope so.

— added by Candy on Wednesday, September 9, 2009 at 10:33 pm

I use to enjoy one of the autism blogs that's not on the hub until she informed me that "those other" people should be cared for by charities. Health care should not be for all. Libertarian. This from a woman who's son has fairly severe Asperger's. It's hard to sympathise with the American POV when this IMO is the "norm" in attitudes. Can't pay taxes to help "those other people".

There was just a case in Nova Scotia about abuse within one of their residences…. that frightens me. Here we no longer have the big complexes but…. Have to keep remembering that's 14yrs away still.

Getting an Augmentative Communication Device at school… Need to remember today's "good stuff" and not worry about tomorrow… tomorrow will come soon enough.

— added by farmwifetwo on Thursday, September 10, 2009 at 7:42 am

I think the most likely way forward is to demand higher qualifications for care givers. That is because demanding qualifications is something that can be enacted legislatively. The labor market would translate higher qualifications into higher pay and higher status. Higher pay and higher status would bring about more motivation and job satisfaction.

I know this does not address the issue of funding directly, but funding really should be coming from tax payers (in a wealthy society appropriate care should be a right, not a matter that depends on charity), and to get more tax payer funding, you need to have higher non-negotiable costs.

— added by VAB on Thursday, September 10, 2009 at 1:51 pm

Susan – that was very well said, and something I have thought for a long time. To VAB: higher qualifications won't have nearly as positive effect as simply paying more. A drawn-out qualification process will remove as many people who want to work temporarily in the field as it will encourage those who want more money. If you want to pay people more, then pay them more. Training should be closely tailored to the actual task – when you hand it over to 3rd parties, such as colleges, its cost and complexity tends to balloon beyond reason, as those institutions are incentivized to maximize the time and expense spent on them, which takes away money from the people who need it. Case in point: teacher training. How many more people, particularly older people, would be willing to give teaching a try if it weren't for the ridiculous hoop jumping system we have? I know I would.


— added by Mort Dubois on Thursday, September 17, 2009 at 12:24 pm