The immorality of ‘optional’ care

I read in the newspaper this morning that the NC Senate is considering cutting “optional” Medicaid services as the costs rise.

Sounds reasonable, right? That’s until you hear what’s optional. The place where my friend Stacie and her best friend, Ashley, live is optional.

That’s Stacie in the photo, showing off her beautiful smile. I met her and Ashely five or so years ago when they went to their prom. Although both young women are non-verbal, they have effective ways of communicating with each other and their caregivers. When Stacie thought she was running late for her hair appointment the day of the prom, she tugged on my sleeve, pointed to her watch and touched her hair. I promised her the hairdresser would wait for her.

Stacie and Ashley have lived together since they were small children; they’re in their mid-20s now, living at one of three residences at the Irene Wortham Center. Their days are filled with activities and caring people, and they are as close as any two sisters — there’s even a little rivalry between them.

But the NC Senate believes these residences and the services they render are “optional.” Extra. Non-essential. If the funding is cut off, Stacie and Ashley don’t have family who can take them in and care for them. They likely will land in separate nursing homes where there is little emotional or physical stimulation.

Liz Huesemann, the executive director of the Irene Wortham Center, doesn’t think she will be able to get enough money to continue caring for these two young women — and 22 other people who are helpless to decide their own fate.

“I’ll tell you what will happen,” Huesemann said. “They’ll wither away and die. They’ll just die.”

Also optional will be eye care and dental care for adults, and God only knows what else. The story in the newspaper didn’t go into much detail. Maybe that’s because the people in the NC Senate know people would be upset to know what’s about to happen to people with serious disabilities.

Or maybe they figure most people really don’t care what happens to less-than-perfect human beings. Historically, their needs have been ignored. They were warehoused in places like Wrentham State School in Massachusetts and Letchworth Village in New York, and they died very young.

Then in the 1960s and 1970s, advocates demanded humane treatment, and things improved. Warehouses became homes, with people grouped in smaller numbers, and even the most profoundly disabled people receiving stimulation and therapy.

We’re about to take a huge step back in time. Don’t think for a moment people with disabilities don’t understand when no value is placed on their lives. Stacie and Ashley know people care about them. They know someone will help them when they need it.

I can’t imagine placing them in a nursing home that doesn’t have the facilities or the staff to care for them properly.

It matters very much to me. If it matters to you, call your state senator in Raleigh and tell him or her you’re watching.

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