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April 1, 2012

Home Care Vs. Out of Home Care for Autistic Adults

Award Winning Non-Fiction Blogs - BlogCatalog Blog DirectoryWhat My Severely-Autistic Adult Son Would Cost California if our Family Didn’t Receive Home Care Support:

According to California’s Legislative Analyst Office, the cost of basic placement for my severely-autistic 23-yr old son at the place he would’ve went (Fairview Developmental Center) if we didn’t fight to keep him home is:  $355,424 a year. Ironically a Fairview team of experts evaluated him at needing “2:1 care” during time of extreme self-injurious behavior.

According to a Disability Right’s legal analysis, cost of providing 3- properly trained employees (who split shifts throughout year) for my severely-autistic son’s required 24 hour, 7 day a week 1:1 protective care--would cost the state institution an additional: $193,775 a year.

Total: $549,199. This total doesn’t include outside services that would be utilized to manage my son’s level of complex behavioral and medical care. The total amount also doesn’t include episodic 2:1 staffing, which is a state documented need. Nor does it consider cost of overtime or workman’s comp claims for state employees working with my son’s level of care. Considering these realities, the cost of care at a state institution rises to over ONE MILLION bucks a year.

Currently, California is providing a fraction of that amount for my son’s care, in the least restrictive and safe environment, at home, with a family and nurses who know and understand his complex needs.

Recall families aren’t obligated under California law to care for adult autistic children. It’s a sacrifice. It’s not always easy.

For one, when families provide home care, they use their own stuff. This means a lot of wear and tear on home, along with increased expenses. As in: 5-mattresses a year (the number of annual X I’ve had to replace soiled mattresses) or excessive water bills (my son’s obsessed with 3-baths a day plus hot tub is used as emergency intervention for extreme SIB), extra garbage costs (diapers, bed pads, chucks, nursing gloves, air purifiers, food), smoke detectors, heat and air conditioning, etc...

How else to families providing home care save state big bucks? Family pays for never ending laundry (many severely-autistic go through 2-3 clothing changes a day), gas to and from medical appointments, recreational costs, special foods, haircuts, sheets, weighted blankets, allergy free pillows, sensory friendly pants, sweaters, bathing suits, towels, shirts, shoes, socks, hats, sunglasses, sunscreen, ice packs, music therapy CD’s, wound care items, oxygen tanks, special lotions, shampoos, conditioners, vitamins, herbs, toothpaste, jackets, sensory toys, etc...  

Also consider when families receive stipends for home support, family may pay home health aides/nurses directly from a stipend. This means family uses personal computer, printer, paper, stamps, envelopes, gas, lights, phone and precious time to ensure overall home support is a success. Other duties include (all of which I do) recruiting, training, hiring and monitoring home health staff. This isn’t by choice. State officials could never find nurses or health aides for my son, as if they weren’t invested in his home care. As a result, I figured I would have to go out and recruit my own team of nurses. It took a while until I got some really great ones. I sure learned a lot.

I also provide all the medical, behavioral and nutritional management and oversee all medications. I don’t get a salary for any of this. If my son were placed out of home, persons doing above work would be more than one person, getting paid to do all this. 


Nikki said...

hi i am young girl with high high functioning autism i seee your pain and struggles i have heard the finding a way for people with non verbal autism to speak.... i am thinking its not mental but maybe he has bad dreams or something upset him in the night i know i myself am sensitive to many things and have some heightened senses....i dont know how resolve it but maybe if he had a way like pictures to express his pain....then again i am no psychologist....

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