March 5, 2008
Stroke victim’s push for home care
speaks volumes
BY PAUL HUGHES
REPUBLICAN-AMERICAN
HARTFORD — A stroke has stilled Bob Veillette’s tongue, but not his voice.
Through others, Veillette is now speaking out for expanding long-term care
options under the state’s Medicaid program.
On Tuesday, Bonnie Veillette spoke for her husband, reading a statement to state
lawmakers that the long-time newspaperman dictated to her by blinking his eyes
in a code the family developed to communicate.
Their message: Make it easier for families to care for loved ones at home.
The stroke in 2006 left Bob Veillette paralyzed. He can only slightly move one
finger, turn his head slowly from side to side, and blink his eyes.
Today, his eyes are how he communicates. A look up or down means a simple
“yes” or “no.” To say more, someone must read off letters of the alphabet to him,
and he then rolls his eyes to pick the
letter he wants.
The Veillettes made a not-soeasy trip
from Naugatuck to Hartford on Tuesday
to testify before the Human Services
Committee on two long-termcare bills.
“I am sure you will do what is right,”
Bob Veillette said in his statement.
Photos by Steven Valenti/Republican-American
Rep. Kevin DelGobbo, R-Naugatuck, sits on the floor next to
Bob Veillette, former managing editor of the RepublicanAmerican, before a hearing in the Legislative Office Building
in Hartford on Tuesday. Sitting next to Veillette are his
daughter, Stephanie DeLuca, and son, Mark.
The former managing editor of the Republican-American offered some heartfelt
words of advice to committee members with a twinge of his trademark humor.
“May I offer three pieces of personal advice for all of you,” Bonnie Veillette said,
reading from her husband’s statement.
“Stay with loved ones at home if circumstances allow. No. 2, plan now. No. 3, take
nothing for granted. No. 4, count your blessings. OK, he said, that is four, and he
quipped, I failed math.”
The Veillettes urged passage of legislation to expand a new home-care program
and to set up a clearinghouse for information on long-term-care options. One of
the couple’s two sons and their daughter also testified Tuesday.
“My dad, Bob Veillette, has fallen through the cracks of the current Medicaid program since his stroke in 2006. I am certain he is not alone,” daughter Stephanie
DeLuca said.
The Veillette family is backing legislation that would allow patients to use
Medicaid funding for less expensive home care rather than more expensive
nursing home care.
The legislature approved the state’s participation last year in a new federal grant
program that is aimed at moving people out of institutional long-term care.
The legislation last year required the Department of Social Services to serve 700
participants through a pilot project in five years. However, the department has
yet to get the demonstration project up and running.
There are proposals to expand the number of slots to 5,000, set up a trust fund to
finance the program and eliminate a requirement that
participants have to spend six months in a nursing home to
qualify.
One of the activists backing the changes is Joe Stango, a financial analyst from Southbury who mounted a grassroots push
for more home-care options under Medicaid in Connecticut.
Joseph Stango is working with
the Veillettes on their effort.
“The reality is when we find a family like the Veillettes who want to take care of
each other, who want to help each other, we need to hold those families up as an
example,” Stango said. “We need to embrace them, we need to help them in their
efforts to help each other, and, above all, we need to say to society, ‘This is what
families do. This is how they act.’ Our policies for Medicaid do the exact opposite.
We encourage families to break up.”
On Tuesday, Bonnie Veillette and her children recounted the family’s travails
since the stroke.
“We put three children through college and were looking forward to retirement,
and, in one brief moment, it was gone,” Bonnie Veillette told the Human Services
Committee.
The massive brain stem stroke left Bob Veillette in what is known as “locked-in
syndrome,” a rare condition that affects an estimated 25,000 to 35,000 people in
the United States. The 63-year-old Veillette is a complete quadriplegic. He must
use a feeding tube because he cannot swallow. He cannot speak.
“He is dependent for all his needs, and he describes this as a haunting
nightmare,” Bonnie Veillette said.
“What has happened to my dad and consequently our family would fall into a
category of events that can only be described by words like catastrophic, unfair,
devastating, tragic and unplanned,” said son Greg Veillette, a doctor living in
Boston.
After the stroke, Bob Veillette spent six months in hospitals. The family looked
for nursing homes, but found no suitable one that would take such a medically
challenged person. They decided to continue his care at home.
Medicaid paid $9,000 a week for his care in a rehabilitation hospital. He could
have continued to stay there, or Medicaid would have paid approximately
$10,000 a month for a nursing home.
But once her husband came home in October 2006, Bonnie Veillette said, the
Medicaid payments stopped. The family paid all his expenses while they waited
16 months to get him accepted into a special home-care program.
The acceptance came in January, but the family continues to pay thousands of
dollars each month in care-related expenses. Bob and Bonnie Veillette are now
living on his pension, Social Security and money friends and family help to raise.
Home is where the Veillettes are determined to stay.
“We know we are going to be home as long as we can do it,” Bonnie Veillette told
the Human Services Committee.
***
Veillette’s statement
Unable to speak, Bob Veillette communicates by blinking his eyes in a code the
family developed. In the photo at left, his wife, Bonnie, reads a statement from
her husband to lawmakers on the Human Services Committee during Tuesday’s
hearing:
Dear committee members,
Thank you for your time, dedication and especially
looking out for us. I support Joe Stango’s push for the
bills. I am sure you will do what is right.
May I offer three pieces of personal advice for all of
you.
Stay with loved ones at home if circumstances allow.
No. 2, plan now.
No. 3, take nothing for granted.
No. 4, count your blessings.
OK, he said, that is four, and he quipped, I failed math.
With gratitude,
Bob Veillette
Copyright (c) 2008 Republican-American 03/05/2008