
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. iqoption
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.