A burden shared

March 23, 2013 

The average age of North Carolinians is climbing. The number of Tar Heels 65 or older increased 25 percent between 2000 and 2010, to nearly 13 percent of the state’s total population. And with the rise in age comes a rise in anxiety as seniors worry about whether they have enough to provide for themselves and, if not, who will provide for them.

Within that group is another for whom that concern is particularly acute: the parents or caretakers of those living with mental and physical disabilities.

What will happen when they die or become too old to care for their loved ones? After years of sacrificing to keep families intact at home, will group homes, assisted-living situations or expensive nursing homes be inevitable?

In Durham, one bright spot has appeared. It’s an answer that is at once simple, ingenious and comforting. And, with a little help, it could become a model for others.

As Yonat Shimron reported in Arts&Living last Sunday, a few local families caring for loved ones with disabilities have chosen to live together – with able-bodied folks wanting to assist them – in a community of support and empathy.

In 14 refurbished and covenant-restricted buildings downtown, nine families so far are creating the only such urban neighborhood in North Carolina and possibly the United States.

The project, called North Street community, is a beautiful example of what can still happen when determined people with means, a common purpose and generous spirits solve problems together. Members of Duke Divinity School are partnering with the families, refurbishing one of the buildings for those who want to spend a year living with and helping them.

A beautiful blessing

Joanne and Dennis Papinchak and daughter Amy are one family finding the arrangement a blessing. Without extended family nearby, the couple felt vulnerable as they contemplated their future with Amy, who was diagnosed 20 years ago with Williams Syndrome, a genetic condition characterized by developmental delays and learning disabilities.

Amy Papinchak, now 22, is one of more than 400,000 adults in North Carolina with disabilities that make it unlikely they can live independently, according to the Census Bureau. That’s not including adults in institutions. The state is also home to 12,000 children ages 5 to 17 who have independent-living issues.

Most North Carolina families caring for adult loved ones with disabilities have very few options, said Vicki Smith, executive director of Disability Rights NC – especially when planning for the future. The odds for people who have been able to keep a child at home into young adulthood are overwhelming when the parents start aging, she said in an interview.

“How are they going to sustain that?” she said. “And these are young adults who don’t need to be put in large settings, and if they are, chances are they will become depressed, and it’s a downward spiral.”

Best lives, lowest costs

That spiral can lead someone moved from a family home to a group home to require a costlier assisted-living space and then, perhaps, a nursing home or institutional bed. Given that the vast majority of adults with disabilities receive Medicaid, the further up the assistance ladder they go, the more costly it becomes for all of us.

Helping families who want to care for disabled adults at home create their own communities – wrapped inside our communities – has no downside. It leads to the best possible lives for our neighbors with disabilities at the least societal cost.

Replicating North Street community inside a government program isn’t feasible because of the number of choice-limiting and independence-restricting regulations that using state money would require, Smith said.

But offering grants, much in the way charter schools work, to families who have concrete and workable plans to band together this way might be an option.

The North Street community alleviates the fears of aging caretakers with a concept built around the wisdom of the saying: “A burden shared is half the burden. A joy shared is twice the joy.”

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