On Friday, May 17, 2013, at 11:30 am in the Governor’s Reception Room, West Virginia Governor Earl Ray Tomblin will sign House Bill 2731, which expands services which can be provided in the homes of disabled and elderly West Virginians.
“Our ultimate goal is to prevent disabled people who can be cared for in their homes from being placed in institutions.” said Delegate Barbara Evans Fleischauer, lead sponsor of the bill. “As Dorothy kept saying in the Wizard of Oz, there’s no place like home.”
The bill sets up a regulatory system to allow health maintenance tasks to be performed by trained, supervised personnel at group homes or in private residences. Health maintenance tasks covered in the bill include tube feedings, ostomy care, and monitoring of blood sugar levels using glucometers.
Supporters of the bill hoped to include respirator and ventilator care among the covered health maintenance tasks. Instead, an advisory panel will be appointed that will make recommendations for legislation to be presented next session on additional health maintenance tasks.
According to Ann McDaniel, Executive Director of the West Virginia Statewide Independent Living Council, state medicaid cuts off nursing services to persons using ventilators and respirators in their homes when they turn 21. “Unfortunately, many West Virginians currently have no choice but to live in out of state nursing homes,” she said.
Thirty-nine year old Josh Hancock of Monongalia County is one of those West Virginians who may be facing that tough choice. Right now Mr. Hancock, who has Duchenne Muscular Dystrophy, is living at home and uses a respirator and ventilator to breathe. His sixty-eight year old mother, Karen Hancock, has been taking care of Josh and his machines on her own for years. But Karen now has back problems and is unsure how much longer she will have the physical or financial ability to assist her son Josh. She said her son needs to be suctioned 5-6 times every night.
“We pay $2400 of our own money per month to have help during the night,” explained Karen Hancock, “but if anyone misses a shift, I am up all day and most of the night suctioning and turning him. Physically, it is extremely difficult for me to do now because of my age and my back.”
The bill is named after Ken Ervin, a disability advocate who worked to bring West Virginians in out-of-state nursing homes back to the state. Mr. Ervin, who died in 2007, was named a Distinguished Mountaineer by former Governor Joe Manchin.
Fleischauer noted that most legislation is not successful the first year it is introduced. She said she hoped Mr. Ervin’s widow and son would be pleased that some progress has been made.
Bill sponsors and supporters are to be presented with ruby slipper pins at the signing ceremony. “The ruby slipper pins remind us that there is no place like home,” said McDaniel, “and although we are very grateful that House Bill 2731 passed, we want to remind everyone that more work must be done to help West Virginians stay in their own homes.”