Special needs, extraordinary concerns

From the St. Paul Pioneer Press Opinion page, May 3, 2020

It took many years and many hands to assemble the scaffolding that provides the structure for Lucas Houk’s life.

When coronavirus infiltrated our communities, the structure toppled. Like my son Jack, Lucas was diagnosed in the 1990s, when little was known about autism. His mother, Pat Bailey, is a high school friend with whom I’ve navigated a conundrum almost as confusing as the coronavirus.

Our 28-year-old sons live in apartments in Portland, Maine and St. Paul, Minnesota. With support from paid staff, they shop for groceries, prepare meals, and take care of their homes and themselves.

Lucas has three part-time jobs. In ordinary times, he supplements work with scheduled outings to the library, movie theater, church, and art class.

Routines were Lucas’ lifeline pre-COVID-19. With everything cancelled, he passes time assembling puzzles, drawing, and making videos of his favorite Disney characters.

The days are long, the future uncertain and unsettling.

“We’re all in isolation,” Pat says. “My heart aches.”

Our sons are among thousands of adults with special needs who are trying to understand why their lives came to a screeching halt.

Like the rest of us, they’re biding their time until life resumes — somewhat.

“It took a village to get Lucas to where he was,” Pat says. “Will we have to start over if these jobs don’t come back?”

And what about the supports?

Families and providers have the same goal: to enable people with special needs to live their best lives. At this moment, the goal feels fragile.

Many organizations that support this population are hanging on by a financial thread, for they operate on a fee-for-service basis, with some donor support. Absent an essential service designation, they can’t serve our most vulnerable citizens, which is how they generate revenue and pay their bills.

While their future is uncertain, the void their absence would leave is clear. These organizations serve a vital role for people who have limited options and opportunities.

While Jack and Lucas live semi-independently in apartments, many adults with special needs live in group homes staffed by direct support professionals. If one resident were to contract the coronavirus, his staff and housemates, many already medically vulnerable, would become more so.

For the past 20 years, Sean Kenny has lived in a group home with three other adults who have become like family. He works part-time at Kowalski’s Markets, with support from Merrick, Inc., a provider of employment and life enrichment supports for more than 50 years.

When the shutdown order was issued, a concern was raised about Sean working at a grocery store while living in his group home.

It was a difficult decision, says Sean’s mother, Sherrie Kenny, but the overarching concern was for Sean to keep a valuable job which gives him a purpose. After years of living away, 43-year-old Sean moved in with his retired parents – temporarily.

With Merrick’s services temporarily suspended, the Kennys take Sean to and from work and check in with Kowalski’s to ensure all is well. It’s a manageable stopgap, not a viable long-term plan.

With a mask and gloves protecting Sean at work, the Kennys have taken measures to protect them all at home.

Both retirees, Sherrie and her husband have gotten creative, filling Sean’s free time with cooking, exercise and games, since his extracurricular activities are also on lockdown.

 

Matt Pickford has lived in a group home since 2004. The stay-at-home order presented a quandary for his mother, Kate, who is in her seventies.

The decision to keep Matt, 38, in the group home, came at a steep price. As long as the order is in place, Matt must stay in the group home and his family cannot visit him.

Kate has had to allay Matt’s anxiety and to answer daily questions about what the government is doing about COVID.

A client of TSE, Matt had just begun training at his first paid job when the coronavirus arrived.

Located in Ramsey County, TSE, Inc. provides community-based employment, in-house production work, social interaction and enrichment activities.

I spoke with Lynne Megan, president and CEO, about how TSE and its clients are faring. Of its 350 clients, 40 who work for essential serve employers continue to work and receive support from TSE. It’s too soon to know whether those who held non-essential jobs (like Matt Pickford) will have still have them.

As we wait for life to resume, TSE clients, some with high needs, are isolated at home, often without technology to stay connected. Not every family can support an adult child with high needs at home 24/7, Lynne says. Anxiety is high among a population already prone to it.

With PPP funds on hand, TSE is bringing back staff. But Lynne has concerns. Clients are likely to return to TSE sites around the time PPP funds will be depleted. It will take time to ramp up and it takes time to be reimbursed for services rendered.

Timing will be tricky.

And what about operating in a coronavirus world, with brand new parameters?

Some clients have difficulty with boundaries, others with sensory issues. Will they keep a proper distance? Will they wear masks? With six-foot rules, how can TSE transport multiple clients to jobs in 12-person vans, per usual?

Though many of us harbor concerns about life and livelihood amidst this pandemic, those with special needs and those who support them have exceptional concerns and unique challenges. In the weeks to come, will their scaffolding be reconstructed? Or will it become another coronavirus casualty?

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~~Looking for insight and tips on navigating life’s challenges? You can sign up to receive Caryn’s columns by email.  For more on her family’s journey with autism, purchase a signed copy of her award-winning memoir, “Bitter or Better: Grappling With Life on the Op-Ed Page,” here.