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The Unforeseen Costs: In-home help

May 24, 2011

In this post, Part 4 in this series, I want to cover the costs of personal care attendants, or PCAs. There are obvious costs, like salaries and taxes. And there are not-so-obvious tolls on family life as you might have imagined it. My 2013 apologies for the wacky formatting! This happens in some of the posts I imported to Word Press from Blogger.

For the first year and a half after Joy came home, we did without PCAs. (“PCA” is an acronym for Personal Care Attendant.) I wasn’t keen on the idea of having someone in our home, and with Hope and Mercy both gone at preschool every morning and Faith in private school, I had time free every day I could devote to Joy.

Joy was young. She came home at 13 months with the developmental skills of a two month old. She had no mobility and for a while, the only things she could do without help were lay on the floor and bat at toys suspended over her head; lay propped on her side and bat at toys on the floor in front of her; or sit in a Bumbo chair propped up with towels.

Understanding English was the major thing on her cognitive agenda and while baby toys could not teach much beyond cause and effect and problem solving, you can see that is exactly where she was “at” developmentally: 10-12 months behind her chronological age.
Within months, it was clear to us that Joy’s cognition was developing faster than her motor skills: she understood English almost as fast as her typically-developing adopted sisters did. At the advice of her therapists, we pushed Joy to do tasks she could not do without our help to facilitate her cognitive development. That’s one of the rubs of having a special need that effects fine and gross motor development: the body impedes the brain’s capacity to develop.
As time went by, we became convinced that to maximize Joy’s cognitive potential in these early years where her brain is actively making lots of new synaptic connections –neural pathways that potentially could create work-arounds for the damaged areas –we simply could not leave her to her own devices in play all day. Except when we’re pushing her to do something challenging that she doesn’t want to do, Joy is a very content, happy child. At the age she was in these pictures, she would have played happily for hours with two objects she could bang together, simply enjoying the noise.
We had three therapists who came into our home once a week who were chock-full-o-ideas. Great ideas. Developmental ideas. Challenging ideas. No one ever said, “You are not doing enough.” But measuring Joy’s slow progress, I could see the gap between Joy and her age peers growing. In the end, what finally made me commit to hiring PCAs was my own sense of guilt: that no matter how much time I spent working with Joy during her waking hours, it wasn’t enough.
Enter PCAs. For a little over two years now, we’ve had PCAs coming in to work with Joy five hours a day during the week, and eight hours a day during the summer. Their basic job description is to help Joy do things she can’t do independently. Has it been worth it? I think so. I like seeing that even though her old favorite toys are still favorites, she gets bored and prefers to read books. As she showed us yesterday in the computer lab, she can do a lot more than bang blocks!
There are several other ways families use PCAs and other in-home help. In the case of kids who have FASD and other developmental disorders that result in challenging behaviors, a PCA is behavioral management support: an extra set of eyes, ears and hands to help redirect and de-escalate behaviors; to help run interference between the child and others like siblings and neighbors; to be the child’s “external forebrain” and help compensate for executive functioning deficits. Some kids with complex medical needs also require skilled nursing services in-home.
The common denominator is that at some point, parents feel like even their best is not enough to adequately meet their child’s needs. So they call in reinforcements: in home help. A few generations ago, most children with Joy’s level of disability were institutionalized for life. But as a society, we now agree that it is better to help children with disabilities remain in families whenever possible. So our tax money funds, among other things, in-home care services for people with special needs.
What do PCAs cost? Ours must be in this for love of Joy, not the money, because they make $12 per hour. On top of that, we pay an administrative agency 40 hours twice per year for managing hiring, payroll and payroll taxes. The agency collects the funds payable to Joy under MA, our secondary insurance.
Assistance programs are set up to offer families choices. As we discovered, they might not be meaningful choices. But at least they are there. When we were investigating whether or not we wanted to enroll Joy in MA (Medical Assistance, which is the door to in-home services), our social worker mentioned a flexible spending option that sounded good to us. We’d be given a fixed amount every six months and would have to budget how we spent it among allowable options. Some examples she gave were: hiring PCAs, paying ourselves as a care-giver, hiring house cleaning help and buying adaptive equipment.
We spent a year in that particular program. Of the options given us, it made the most intuitive sense. Our county administered it efficiently so it worked well. The draw-back was that the amount allotted to us was only about 35% of the value of taking Joy’s qualifying service hours in straight PCA time. And with the budget-deficit driven cuts to the program triggering a hefty increase in our premium, the state would be asking us to pay in more than twice what we were getting out under the flexible spending program. We could only hope to approach the break-even point if we switched to the straight-PCA time option.
The Fishbowl Phenomena
On the surface, it sounds wonderful to be offered 65% more PCA time, right? How could Joy not benefit from having someone work with her twice as often? Or so I tried to convince myself as we switched programs. That was the summer I learned about what my friend Julie so aptly calls the fishbowl phenomenon: the psychological toll of having other adults routinely inside your home, what is typically the most intimate sphere in your life.
This will be no reflection on the people you may hire to come into your home. We love every one of our PCAs and if we didn’t love them and how they work with Joy, they would not be here.
That’s actually another unexpected thing: the uncertainties of knowing whether the person you advertise for, who interviews well, and whose references check out, will actually have meaningful rapport with your child or not. When they don’t, unhiring them. Or if the person you hired in May to start in the fall, will forget to tell you she got married and is moving away so isn’t available after all –two weeks before she was supposed to start.
Having staff also obligates you become your own personnel department:  managing hours worked, submitting payroll, staying on top of employment applications and seasonal work calendars. It’s one of the chief ironies of assistance programs: that the staff you hire frees you up to administer your part of the system. But I don’t get paid for doing this. Instead, our employment company collects the administrative fees allowable by law.
The positive side of all of this is that one day when the paperwork burden seemed unusually onerous, I stopped and tallied people. Even through the days of the rotten economy, Joy helped keep 27 people employed. Three of them worked in our home. The other 24 are those I know (among many more I’ve never met) in the enormous bureaucracy required to administer assistance programs that help keep kids like Joy at home in their families where they belong.
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