Autism Awareness Month Misses the Whole Point

Our schedule for this post: FIRST disclaimer, THEN soapbox.

Now, I’ll admit right now that I’m no fluffy optimist. I’m not as bitter and blustery as several of my ahem fellow bloggers, but I do have a sarcastic side, I try not to be too corny.

All that being said, I have high hopes for Autism Awareness Month every year. I truly enjoy the people with autism that I know, and, framed simply, I want others to be aware of how cool it can be to really know someone with autism.

ADDITIONAL DISCLAIMER:
Statistically speaking, there are probably people with autism out there that I wouldn’t enjoy, and OF COURSE nobody is a joy to be around ALL the time, including me.

So every April, I get a little geeked out thinking about how more people will find about autism…and then the big month comes, and guess what?
1. My google alerts are full of sob stories and fundraiser alerts.
2. I don’t see any more public appreciation than usual (which isn’t much) for any:

  • cool projects that people with autism are working on
  • cool stuff that other people do to empower people with autism
  • kudos about how hard people with autism seem to work, all year round, to make sense of neurotypical rules and behavior, and to cope with a consistently high level of sensory overload.
  • So, since we are calling dibs on months to squawk about stuff, I would like to declare the month of May: The Empowered Autism Appreciation Month. Send me your celebrations, love stories, moments of hilarity, and victories having to do with autism. We can appreciate them together.

    1 Comment

    1. BBC fan October 17, 2010 12:06 am  Reply

      See “Autism Home Healthcare Staffing Realities” on You Tube for an insight look at how hard families have to fight for obvious needs. Here’s a family that shows that they have a child who would cost state of California over 356,000 yr. PLUS (plus, meaning the basic cost of institutional care isn’t factoring in the 1:1 this autistic patient would need). This family is willing to KEEP the child at HOME, which saves the state over 200,000 a year, yet the state agency charged with duty to provide home health care under Olmstead Act and other laws, is actually FIGHTING this family, and telling them, “we aren’t equipped to help you….you should place your son in an institution until the budget cuts are over.” As if they will ever be over. What is so news worthy about this story/case, is that the FAMILY has managed to do what GOVERNMENT has FAILED to do: keep their high risk, costly child at HOME. Yet, despite the family doing the job government can’t do, the same government FIGHTS the family and tells them, “we can’t offer you more than 12,000 dollars a month in home health care services,” though the cost of OUT of home care costs would be around $33,000 month!. Now, that is clearly a REASON why California continues to be one of the states that just doesn’t understand how to SAVE money.
      Source: Basic cost for institutional care at Fairview Developmental Center is around 356,000 per year, NOT including 1:1 or 2:1 overtime costs paying extra nurses and staff at institution to care for the type of autistic person portrayed in this and other videos on you tube under cdfoakley and kgaccount. The cost to KEEP this type of autistic person at HOME is FAR less than what it would cost to place him OUT of home. Keep in mind, this person portrayed in videos is OVER 18, so family does NOT have to keep him at home. But they are willing. A rare case indeed, which is a case study in cost effective in home care vs. out of long term nursing care expenses. So the question remains, if California officials do NOT provide this family with needed in HOME supports (nursing assessments repeatedly assessed this case at 2:1) then the state will be paying FAR more than what they need to pay to KEEP the child at HOME. It’s RARE to find families that are WILLING to keep an autistic patient with this HIGH level of care at HOME. So instead of supporting this family, the state pushes them to place the child? How does that make economic sense? Also, keep in mind this same autistic person was in an OUT of home placement for 5 years that left him malnourished, didn’t provide the required 1:1 protective care required, which left him severely injured after a caregiver who was assigned to him, fell asleep and this autistic young man ended up punching himself behind a closed door for so long, that he suffered a hemotama to his ear, which required emergency surgery and left him in hospital for over 3 weeks, due to complications from being in hosptial (most severely autistic patients deteriorate in hospital settings due to unfamiliar setting and refusal to eat and because they often rip out IV’s and try to jump out of hospital bed). Another reason adequate HOME HEALTH supports in a family that is willing to take on this kind of extraordinary care, should be awarded the maximum appropriate supports in home, which is least restrictive settting. If we can’t fight for those on the most severe side of spectrum, than we can’t expect people to understand how important we all are on autism spectrum.

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