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“Margaret likes swimming, riding her bike, and Mom’s cupcakes,” the woman says. She’s older, with ash blonde hair and a friendly face. I’ll call her Shelia. Shelia is my sister’s social worker, and she’s reading through an annual assessment of Margaret’s health, skills, and challenges.
We are sitting around the dining room table—me, Shelia, my parents, the house supervisor, and one of the staff members. We all laugh about the cupcakes. Who doesn’t like Mom’s cupcakes? The laughter is congenial because we’re all here for Margaret, my older sister, who has severe autism.
Margaret, who turned 50 last week, wanders through the room and looks at us out of the corner of her eye. She turns on the radio as if to tune us out, then snaps it off and goes into the other room. “Hi,” she says over her shoulder as she leaves.
A 2012 report issued by the U.S. Census Bureau showed that approximately 56.7 million people, or 18.7 percent of the U.S. population, has a disability. Of those, 38.3 million had a severe disability and 12.3 million needed assistance with one or more activities of daily living. Margaret falls into all three categories.
Shelia works her way through the assessment forms on the computer screen. Margaret likes her bible study class and activities with her roommates. She takes at least one vacation with them each year—this last time to Disneyland. Margaret does the weekly shopping and can read the list and locate items in the store. She will hand cash to the checker, but doesn’t understand money. No, she would not steal, we all agree, but she would easily help herself to whatever she wanted if there wasn’t someone there to remind her to wait and pay. She can shower on her own, but needs to be reminded to use shampoo. She can cook her favorite foods—spaghetti and cookies—but if there were a fire, she wouldn’t know what to do.
Margaret likes her job, Shelia notes. The house supervisor laughs at the understatement of that. Margaret loves her job. She gets up early and dresses up to go to the local dentist’s office where she delivers mail, shreds paper and labels folders. My quiet, tense sister blossoms around her coworkers. She talks to people. She uses new words and phrases she picks up there.
“Have a good one!” she has said to me since starting to work there.
“How many hours is she working now?” I ask.
The supervisor says, “Just two,” and looks down at the table as if she’s embarrassed. She says they’d been talking about increasing Margaret’s hours, but then the dentist sold the clinic and the new dentist was still getting used to her being there, though the staff loved Margaret. And the job coach that pushed for it, a lovely woman, retired because of a chronic illness. Margaret has a new job coach but none of us has met that person yet.
“I wish her new job coach had been able to come today. I emailed them,” Shelia says.
We all look at the empty chair where the job coach isn’t.
“There’s been a lot of turnover there lately,” the supervisor says.
Shelia reads about how Margaret likes to know what to expect and has trouble with change, how she sometimes becomes upset and has a difficult time calming herself down. We all nod.
I look around the dining room of the old craftsman house, grateful for the sturdy walls and doors that help Margaret feel secure and that protect her privacy when she’s having a meltdown.
Margaret has lived in this house for more than 20 years. Our parents bought it in the 1990s and renovated it because the small, cramped apartment housing available to my sister wasn’t working. She had received a final warning from the landlord. If she had one more outburst she was out. This ultimatum made us all laugh, though it wasn’t funny. The question was not if but when. My sister’s single biggest obstacle in life is her difficulty communicating and subsequent frustration.
Margaret’s life has been full of pronouncements like that landlord’s. When my sister was starting school in the 1970s, the superintendent of her district said there was no need for a special education program because were no local children with autism. Scores of families showed up at school board meetings to contradict him, and my sister and their kids were allowed to go to school.
When she got hired at a workshop for adults with disabilities, her supervisor, a retired military vet, managed the staff by yelling. Margaret responded by throwing a chair. She got fired.
Later she worked in an office, doing small tasks like she does at the dentist’s office now. One of her female coworkers talked a lot in a very high-pitched voice, which my sister found hard to cope with. But she didn’t know how to tune it out or say, “Could you please be quiet?” Instead, she pinched the woman, who insisted the company fire her.
Nothing is easy for Margaret. The house, at least, has always been a stable place. In the beginning it was run by a small, locally-owned company. My parents knew the founder, a man who had worked with disabled children and adults. When there was a problem at the house, they just called him up. The same staff members stayed on for years. But the owner retired and sold the company. Now the house is run by a larger health organization with offices all over the country. When there is a problem at the house, there is no one person to call. We have to wait for meetings like this.
As we wrap up, Shelia asks if the family has any concerns. My mother brings up the thing we all know is hardest for Margaret—staff turnover. Lately it seems that there are new employees at the house all the time.
The supervisor, looking uncomfortable, tells us that they are being paid minimum wage. Even she, who has been there for years and manages others. It’s hard to keep people, she says, when they can get an easier job at McDonald’s for the same or more money.
I shouldn’t be surprised, but it’s a stark revelation. But Margaret likes riding her bike, swimming, Special Olympics and Mom’s cupcakes. She likes bible study and taking vacations with her friends. She has a part time job and would like to work more. Margaret is also one of the 12.3 million most vulnerable people in the country. She needs someone to be with her at all times. She can’t drive or take the bus alone. She would not call 911 in an emergency. She cannot be trusted to put on a jacket if it is raining or shorts if it is hot out. People can make more working at McDonald’s than they can caring for my sister.
Officially, my sister is financially dependent on federal and state governments. But her health and happiness really depend on people—job coaches, staff members, social workers, and coworkers. People come and go. People retire. People get sick. I glance at my parents, both in their 70s. It's a precarious balance.
Margaret wanders back into the room. She stands next to me, finally looks me in the eye now that I have been there for two hours. I get up and give her quick hug, and kiss her on the cheek.
Shelia smiles up at her.
“Are you tired of us talking about you?” she asks.
Margaret nods and we all laugh. We disperse and file out the door. Margaret shouts goodbye and slams the door behind us. I stand on the sidewalk and wait for my mother.
My parents bought this house for Margaret, but my other siblings and I have always understood this house is for us too. The house means we don’t need to plan on Margaret moving in with one of us. I’ve been grateful for the house, but I know change is coming. My mother recently mentioned that the company might insist Margaret move into an apartment as her roommates grow too old to live there. I think of her leaving this lovely old neighborhood and transitioning back to an apartment setting like the one she first got evicted from. How would she handle that now, I wonder? The house—with its big front porch, backyard garden, and the sound of kids' voices from the playground—this is her home.
I'm grateful for this house. I'm grateful for the staff and for Margaret's job, part time though it may be. But I know better than to take any of it for granted because we just can't know what's coming next.
