Virginia Woman's Life Revolves Around Disabled Great-Granddaughter
Tuesday, June 23, 2009
For Gail Ertel, who has 11 grown children, the golden years are all about McKenzie. She changes her diapers. Picks up her dropped toys and spilled cereal. Reads from her favorite storybooks. Sings as she sways the child in her mesh cocoon of a swing.
Their lives are bound across three generations, a great-grandmother in her 60s and a child of 7 who has autism and is medically fragile and virtually blind. McKenzie babbles but does not talk. Her sign language is minimal. In times of distress, she bites and furies and flails.
The two share a rented townhouse in Woodbridge, where Ertel reveled the day McKenzie learned to eat a Cheerio, to clap her hands, to open a door. Ertel keeps faith in the child's possibilities, lifted by her deep embraces and sudden smiles, her humming of classical music. Recently, McKenzie used a cane for the first time. Ertel cried.
But the economic fragility of their lives has rarely been so clear -- their difficulties showing how tough it can be to get by as the solo caregiver of a child with severe disabilities. This is especially so for older caregivers, who often have less income and more of their own medical issues. Nationally, nearly 200,000 children 5 to 17 with disabilities are in the care of a grandparent, according to census statistics.
Ertel's sense of stability unraveled when she was told in May that she was not eligible for a Medicaid benefit that helped keep her and McKenzie afloat -- $400 a week that Ertel had combined with her Social Security and McKenzie's disability check to make ends meet. For Ertel, it was no small irony that the imperiled benefit was for six hours a day of personal care, which Ertel provides round-the-clock.
Recently, Medicaid officials told The Washington Post that a mistake had been made and that the benefit was not in jeopardy. But Ertel's relief was offset by disappointment. Medicaid officials also said that as a paid caregiver, she is ineligible for respite care, which is what she had been seeking in the first place. It allows a few hours' break every so often, with hired help to fill in.
So Ertel will get by, but will not get relieved, which advocates say is a problem. Time away from caregiving "is an absolute necessity, especially for an older grandmother," said Jill Kagan of the National Respite Coalition, who said in some cases too much stress can lead to less desirable arrangements, such as foster care or institutionalization.
The multi-generational family of two came together in 2001, the year McKenzie was born on the Eastern Shore of Maryland to Ertel's 16-year-old granddaughter. Ertel, who is widowed, took over the baby's care at 3 weeks old.
So began life with McKenzie. Ertel closed her home day-care business of 19 years in Fairfax County and became McKenzie's full-time caregiver at an age when other people retire to quiet houses and well-deserved leisure. Raising McKenzie was unlike anything Ertel experienced with her own large brood. The girl was hospitalized 17 times in her first year.
Kelli Castellino, who manages the office where McKenzie gets occupational therapy, said she marvels at how well Ertel manages. "She's a remarkable woman and does a great job with almost nothing," she said. ". . . Gail just never gives up. She just rolls with it."
Dawn Peifer, president of the Virginia Association for Parents of Children With Visual Impairments, said Ertel's struggle is but one example of how difficult it can be to do well by children with disabilities and still pay the bills. Many parents lose jobs as they juggle an array of medical visits and therapy needs with the demands of work.
Peifer said she met Ertel and McKenzie four years ago at a workshop for the blind and has become a friend. "McKenzie's a smart little girl, and she's got a lot locked inside her little body, and the only one who seems to understand her is Gail," she said.