Thursday, January 27, 2011

Through the Cracks

There is definitely something wrong in a society when people with disabled children have to choose between paying their rent or paying for the care of their child. I have a couple of friends in this catch-22. Technically, so are we, but we manage to bring in enough to not have such a touch choice. The people I know really caught in this crack are children with very severe disabilities, where the children require a lot of medical care and equipment as well as therapies and other specialized care. The way the system works, they can't make any more money- one parent needs to be home for the child(ren), and if they make over a certain income, their children lose important medical support and services, such as Medicaid or Social Security. Parents self-train because they cannot afford nursing or to hire care, some have to homeschool because the special education system takes too long to fix serious issues that threaten the health and education of the child who is already severely challenged and endangered. Respite care costs money. Wheelchairs cost money. Alternative communication costs money.

I certainly understand reserving government assistance for the neediest families. The problem is that no one in the private sector picks up the slack. The system is made is actually create needy families. It becomes a vicious cycle for families who make too much to qualify for assistance, but not enough to pay for both household expenses and therapy. What happens to them? They have to move back in with their parents, if they have that resource. They have to quit jobs to qualify for the assistance, instead of continuing to support themselves as much as they can and stay off other assistance programs, just getting the assistance they actually need. They drain any saving they have, trying to keep their children off those same assistance programs as much as they can. They spend their days being nurses, caretakers, lawyers, advocates, social workers, coordinators, therapists, educators... because no one can afford all of these services, and yet they are all needed because of the way our society views and treats people with disabilities and their families. Even with families who step up to the plate, no one wins a game on their own.

The attitude of the general public seems to be "sucks to be you." The idea that someone might need assistance means that person is somehow less, somehow a parasite. How very Victorian of them. Instead of being grateful for good fortune, opportunity, and talents, too many in society are spiteful. We need to advance as a society, and look at the basic ideas that move societies beyond the every-man-for-himself attitudes of might makes right: that we are all in this together, and none of us make it out alive. When we stick together, and support each other, everyone's needs can be met and everyone can contribute. Everyone has talents and challenges, and we can all do the best we can if we all help, and don't leave anyone shouldering their lot alone. We can't just assume those who need help are somehow not as good as those who have the opportunities to not be in need. You'd be amazed how quickly those tides can be turned, and the one who thought themselves self-sufficient suddenly and unexpected becomes one in need.

It's a simple rule, folks. Treat others as you would wish to be treated. And it works wonderfully well.


Niksmom said...

I couldn't have said it anywhere near as eloquently. AMEN!

Casdok said...

A very simple rule.
And well said.

farmwifetwo said...

To be quite blunt "it's the American way". Your democrates are as left as our conservatives and here they consider that to be "tea party" right.

Then the pot shots that are taken at our health care system. Yes, I appreciate it isn't perfect... but my surgery when I googled it costed approx $20,000 in the US - and not covered by insurance most of the time. Mine cost me $316 for the hormone pills prior to it since we don't have private dental/drugs for the Dh and I. The boys... have dental/drugs b/c of their ACSD (assistance for children with severe disabilities - replacement $$ for incomes under $60,000/yr)

I'll take my world and it's imprefections over yours any day. See, b/c of our lower income I get my child tax benefit - doubled due to their disability, ACSD etc... so I can stay home.

Shelby Hudspeth said...

This topic is very close to home for me because we were that family. My husband started making to much money at his new job that didn't have insurance so my son lost his social security and his medicaid. So we made a hard choice. He quit his job that where he made great money to work for a average job that has great insurance. We moved into a spare house my parents had. I work at a local resturant and the owner pays me cash....I know it's wrong but we have to do what we have to do! We make it but it is still a struggle! The way the system is set up SUCKS!

Sullivan said...

At least for me, having a disabled child has really driven home the meaning of "gifted". Being healthy is being gifted. Being intelligent is being gifted. Gifted isn't a badge of pride, just a statement of fact--gifts are not things we earned or can take any credit for. People lacking gifts aren't to be pitied and they aren't to be disrespected. But respect and kindness don't cost anything. Support? Why not?

You say it in a different way, but if we live long enough, we will all be disabled. People should take that to heart.

Lisa Quinones Fontanez said...

GREAT post! This one really hit close to home. My husband and I are in this very situation. We don't qualify for anything because we both work. But our income is just enough to eat, pay our bills and live. There is very little left over to pay for out of pocket therapies, attorneys etc. We are stuck in the middle and we have pretty much exhausted our financial resources. I use my 401k like an atm and it worries me. We live check to check. And neither one of us can afford to quit our jobs. We shouldn't have to either. So thank you for writing this and shedding some light on the folks left in the middle.