In Tennessee, families of disabled people question how personal assistance, nursing cuts save costs

From The Jackson Sun. In the picture, Sarah Kurek tells her daughter Joan ‘I love you’ and gives her a kiss at their home in Lexington, Tenn. Sarah Kurek and two assistants care for Joan, 67, who has had multiple strokes and has high blood pressure, mental retardation and cervical spinal stenosis.

Lynn Johnson described her 35-year-old son Anthony as blind, with cerebral palsy and functioning mentally at the age of 6 months.

"He has to do diapers, be fed; everything must be done on him," she said.
"He's like taking care of a 100-pound baby," Johnson said.

For about 1,827 people with intellectual and developmental disabilities, state funding cuts drove a reduction in one-on-one nursing services to 12 hours a day and limited personal assistance services to 215 hours a month.

The cuts left Tennessee families with a choice between coping with personal aid services for fewer hours or transferring loved ones to some form of communal living with shared staffing.

Johnson is one of about 600 who have filed complaints with the Office of Civil Rights in Atlanta against the state of Tennessee.

She said cutting disability funding according to living style — supported living or family-provided care — is discriminatory.

But Department of Intellectual and Developmental Disabilities Commissioner Jim Henry said fighting such lawsuits takes more money away from those who need it.

"Let me just remind people we spent $20 million on lawsuits," he said. "In the last 20 years, those kinds of things drive resources for people and services."

The Office of Civil Rights will investigate 45 complaints in a first round of investigations that will set a precedent for the other cases, Johnson said.

Her son is not one of the 45 cases, but 67-year-old Lexington resident Joan Kurek is.

"Joan's mental age is about 3," her sister, Nancy Murray, said in their family duplex.

She has had multiple strokes and has high blood pressure, mental retardation and cervical spinal stenosis, Murray said.

"A risk of fall could be fatal," she said.

Joan's personal assistant, Virginia Carver, brought out a removable gray neck brace that Joan must wear while she is transferred out of her wheelchair.

"She has to be hands on," Carver said.

The family uses two personal assistants, with the state funding 126 hours of care a week, or 18 hours a day. Joan's mother, Sarah Kurek, also provides care.