A stroke left Bob Veillette, the 63-year-old former Waterbury newspaper editor, with locked-in syndrome, a condition in which his mind is working but everything but his eyes are frozen. He can communicate only by moving his eyes up or down for yes and no. After waiting a year, the family was recently accepted into a state program that helps pay for personal care assistants, but it does not cover the cost of all of his care. (BOB CHILD / AP / March 4, 2008)
The stroke that left 63-year-old former Waterbury newspaper editor Bob Veillette almost completely paralyzed is still difficult for his family to accept.
But the fact that Veillette's wife, Bonnie, is going broke and running herself into the ground trying to care for her beloved husband at home makes no sense at all to his children and others who testified at a legislative hearing today.
Speaking before the Human Services Committee, Veillette's son, Greg, said before suffering a massive brain-stem stroke in 2006, his father was a vigorous man who ate right, exercised and played the piano at countless charity events.
"Now, he has been completely abandoned by some of his people,'' said the younger Veillette, a physician in Boston. While Veillette's friends and family have stuck by him, his son said, the state and his insurance company have turned their backs, refusing to pay for the services he needs to avoid spending the rest of his life in a nursing home.
He is one of many with the same concern. Veillette's family was joined in Hartford at a public hearing by a large contingent of senior citizens and disabled residents who want the state to free more people from nursing homes by increasing government reimbursement for home care.
Under current rules, the Medicaid program pays mostly for nursing home care which is generally more expensive -- and often less desirable -- than home care.
Connecticut is among a handful of states in a trial program that allows the state to use Medicaid money to pay for 24-hour home care and other services. The $24.2 million grant-funded program, expected to begin this summer, is designed to allow 700 people now in nursing homes to get care in their family homes or in supported apartments.
Joseph Stango, a Waterbury financial adviser who started lobbying for increasing home care funding in 2006, after a dearth of support forced his disabled mother into a nursing home, said he is grateful for the trial program.
But, he said, it does not go far enough. He is seeking legislation that would immediately expand the home care option - known as money follows the person - to 5,000 people.
He also wants lawmakers to change an eligibility rule that makes the new Medicaid-for-home-care money available only to people who already have been in nursing homes for six months. With that requirement, people like Bob Veillette do not qualify.
With her husband in a wheelchair by her side Tuesday, Bonnie Veillette told committee members that she could have left Veillette in Gaylord Hospital, with the state picking up the $9,000-a-week tab.
Instead, she chose to bring him home to Naugatuck, where until January, friends and family donated about $100,000 to help pay for his care at a cost of several thousand dollars a month.
The stroke left Bob Veillette with locked-in syndrome, a condition in which his mind is working but everything but his eyes are frozen. He can communicate only by moving his eyes up or down for yes and no. After waiting a year, the family was recently accepted into a state program that helps pay for personal care assistants, but it does not cover the cost of all of his care.
Citing a recent UConn study, Stango says the cost of nursing home care can be twice as expensive as home care.
"But it's not about the fiscal, my issue is the moral issue,'' said Stango, whose mother, Dora, died in December at the age of 84. "We've taken a whole population and taken away their civil rights. All we're asking is for people and their families to have a choice, it just so happens that it's less expensive.''
Social Services Commissioner Michael Starkowski supports the trial program for 700 people. But he says the state is not ready to expand the program for 5,000 people, as Stango wants. He said the federal grant would not support additional people and the state simply cannot afford it. Another problem is that there are not enough nurses and home care aides to care for such a huge influx of people returning to private homes.
Stango said he'd like to see the savings from reduced nursing home costs put into a trust fund that would be used to train more nurses and other health care providers who he acknowledges will be needed to provide skilled nursing care in individual homes.
Stango says the expansion of state funding for home care came too late for his mother, and may even elude Bob Veillette and his family. But the issue should be important to everybody as they grow older.
"It's a social contract for those who are coming up to bat,'' Stango says, "which are the baby boomers.''
But the fact that Veillette's wife, Bonnie, is going broke and running herself into the ground trying to care for her beloved husband at home makes no sense at all to his children and others who testified at a legislative hearing today.
Speaking before the Human Services Committee, Veillette's son, Greg, said before suffering a massive brain-stem stroke in 2006, his father was a vigorous man who ate right, exercised and played the piano at countless charity events.
"Now, he has been completely abandoned by some of his people,'' said the younger Veillette, a physician in Boston. While Veillette's friends and family have stuck by him, his son said, the state and his insurance company have turned their backs, refusing to pay for the services he needs to avoid spending the rest of his life in a nursing home.
He is one of many with the same concern. Veillette's family was joined in Hartford at a public hearing by a large contingent of senior citizens and disabled residents who want the state to free more people from nursing homes by increasing government reimbursement for home care.
Under current rules, the Medicaid program pays mostly for nursing home care which is generally more expensive -- and often less desirable -- than home care.
Connecticut is among a handful of states in a trial program that allows the state to use Medicaid money to pay for 24-hour home care and other services. The $24.2 million grant-funded program, expected to begin this summer, is designed to allow 700 people now in nursing homes to get care in their family homes or in supported apartments.
Joseph Stango, a Waterbury financial adviser who started lobbying for increasing home care funding in 2006, after a dearth of support forced his disabled mother into a nursing home, said he is grateful for the trial program.
But, he said, it does not go far enough. He is seeking legislation that would immediately expand the home care option - known as money follows the person - to 5,000 people.
He also wants lawmakers to change an eligibility rule that makes the new Medicaid-for-home-care money available only to people who already have been in nursing homes for six months. With that requirement, people like Bob Veillette do not qualify.
With her husband in a wheelchair by her side Tuesday, Bonnie Veillette told committee members that she could have left Veillette in Gaylord Hospital, with the state picking up the $9,000-a-week tab.
Instead, she chose to bring him home to Naugatuck, where until January, friends and family donated about $100,000 to help pay for his care at a cost of several thousand dollars a month.
The stroke left Bob Veillette with locked-in syndrome, a condition in which his mind is working but everything but his eyes are frozen. He can communicate only by moving his eyes up or down for yes and no. After waiting a year, the family was recently accepted into a state program that helps pay for personal care assistants, but it does not cover the cost of all of his care.
Citing a recent UConn study, Stango says the cost of nursing home care can be twice as expensive as home care.
"But it's not about the fiscal, my issue is the moral issue,'' said Stango, whose mother, Dora, died in December at the age of 84. "We've taken a whole population and taken away their civil rights. All we're asking is for people and their families to have a choice, it just so happens that it's less expensive.''
Social Services Commissioner Michael Starkowski supports the trial program for 700 people. But he says the state is not ready to expand the program for 5,000 people, as Stango wants. He said the federal grant would not support additional people and the state simply cannot afford it. Another problem is that there are not enough nurses and home care aides to care for such a huge influx of people returning to private homes.
Stango said he'd like to see the savings from reduced nursing home costs put into a trust fund that would be used to train more nurses and other health care providers who he acknowledges will be needed to provide skilled nursing care in individual homes.
Stango says the expansion of state funding for home care came too late for his mother, and may even elude Bob Veillette and his family. But the issue should be important to everybody as they grow older.
"It's a social contract for those who are coming up to bat,'' Stango says, "which are the baby boomers.''
Author: Hilary Waldman at hwaldman@courant.com
