The following article was written in the St. Albans Messenger by Leon Thompson, well know St. Albans Messenger Correspondent and Author of several books, in the March 30, 2010 Edition:
The Lorraine Parsons project
Swanton woman
fights for 55-year-old
'miracle baby'
By LEON THOMPSON
Messenger Staff Writer
SWANTON — After years of knowing they had it, Vermont Republicans lost Lorraine Parsons' vote in the wake of Gov. Jim Douglas' call for human service cuts during his January budget address. And now, she's stuck waiting for a Democrat to impress her.
On March 22, the 77-year-old Swanton woman attended a Democratic gubernatorial forum at South Burlington High School, where she hoped one of the five candidates -all vying for Primary support - would hear about her son, Allen, a 55-year-old deaf Fairfax man with cerebral palsy.
When talk turned to potential cuts to the Agency of Human Services (AHS), sparked by a grim fiscal outlook and a drum-tight state budget, Sen. Susan Bartlett, D-Lamoille, promised "no one would be left on the side of the road," Lorraine recalled. Sen. Doug Racine, D-Chittenden, said, "We want to hear your stories."
When Lorraine approached Racine, ready to capitalize on his offer, he wrote her name and number on a pad and "brushed (her) off," she said.
"The whole thing, from all five of them, it was all politics as usual," Lorraine said late last week. "It's just so unconscionable, now that he could face cuts."
He would be Allen.
Like thousands of other Vermont parents of children with disabilities, Lorraine has watched this legislative session like an owl over field mice. Last Thursday, the Democratic-led House overwhelmingly approved a spending plan that calls for more than $1 billion in state general funds and more than $2 billion in federal funds.
While the still-in-progress spending plan includes $46 million in 'Agency of Human Services (AHS) cuts, lawmakers have proposed using $62.5 million in federal funds to pad AHS' caseload reserve, or what has been called "a savings account for the agency."
In a recent letter to the Messenger, Rep. Carolyn Branagan, a Georgia Republican and member of the House Appropriations Committee, said, "Within the Human Services changes, we were assured that no services for the elderly nor services for people with disabilities would be touched."
Last week, Branagan said Rep. Martha Heath, appropriations chair, was "absolutely committed to keeping the health, safety and welfare of all Vermonters protected." Branagan anticipates full funding for AHS. : "This was a priority for the Appropriations Committee," she said last week. "The governor's ; office definitely saw these people as the most vulnerable."
Lorraine isn't convinced. She said she's not alone.
"I won't be relaxed or comfortable until I know my son is going to get ;the services he needs," she said. "I'm concerned about everybody else, too, and everybody else is concerned. I know a budget is just a plan. So they're promising no cuts. Well - what's the plan? They've got to be more transparent with us, with all of us." - Lorraine knows Allen's story "pales in comparison" to others in Vermont. Yet she wants it heard. She worked diligently to testify in Montpelier, before the House Human Services Committee, the Senate - any panel that would listen. She made a few phone calls and collected more numbers, but she never got to go on the record for her son. Until now.
Had Lorraine testified in Montpelier, she might have worn the full-length black shawl, matching pants, and red shirt that often gets her mistaken for a Bostonite. Then, when she spoke, legislators would have heard her voice tremble - not with nerves, but with the passionate fight she inherited while reared on a Franklin County dairy farm.
Sitting there before lawmakers, Lorraine would have flashed back to a Burlington hospital. May 20, 1954. Allen entered the world three months premature, the oldest of three children, and clinically dead. Doctors stimulated his heart with warm and cold water plunges and caffeine injections. Lorraine didn't see him for two days. She couldn't hold him for three months, as he laid in isolation, fragile.
"He's my miracle baby," she said during a March 15 interview with Allen in Fairfax, where he lives full-time with his dedicated friend and caretaker, Joann Pinsonneault, 54. "It was darkness after his birth, though. It was frightening. I didn't know how he was."
Doctors said Allen would not live past the age of 5. When Lorraine first cradled him, she ignored their theory.
"I never doubted he would make it," she remembered, "because I knew what my job was, and I had work to do."
Allen was a hydrocephalic baby, meaning he had water on his brain. He kept his sight, lost his hearing by age 2, and quickly contracted cerebral palsy. Lorraine did not hide him. When outside, she covered him with a screen and kept him on a blanket.
"I didn't want him to be an inside baby, secluded and holed up, so I protected him," she said. "I protected him."
He took his first steps at age 5 and attended the former special needs-focused Bennett C. Douglass School in Burlington, where a teacher dubbed him "mentally retarded," a common diagnosis of the time.
"My son was not mentally retarded," Lorraine said. "I fought that battle for years."
Allen underwent years of evaluations, sometimes in a cubicle, until Lorraine ordered a home visit, after a professional recommended Allen for the former Brandon Training School, a move Lorraine strongly resisted.
During the home visit, Allen wowed psychologists by interacting with his mother and building a model-clay crock-pot - complete with an electric chord and plug.
"They were smiling the whole time they were there," Lorraine said. "They just didn't believe it. Then, things began to happen."
False diagnoses behind her, Lorraine enrolled Allen in Brattleboro's Augustine School for the Deaf, where he graduated at a sixth-grade level; he was 18. During Allen’s years as an upperclassman, his father unable to handle his son’s condition and the stigma it caused at the time, put Lorraine in a position she never envisioned: making a choice.
"So I chose my son," she said. "I had to give him the best life that I could, and if his father didn't want to be a part of it, so be it. He wasn't."
Allen also attended Crotched Mountain, a New Hampshire vocational school for people with disabilities, where he made a coffee table and chest in woodworking class. He was still on his feet, walking and riding a bike.
He wasn't relegated to a wheelchair until eight years ago and has lived with Joann since 2004.
"He's accepted his challenge every step of the way," Lorraine said. "Every boy has a second man in his life. Joann is Allen's."
A Franklin County native, Joann lived in the State of Georgia until her sister, employed by Northwest Counseling and Support Services (NCSS), told her about Allen. Until Joann agreed to take Allen in, he had bounced around group homes in Swanton, Grand Isle, St. Albans, Alburgh, and Richford. He often made the other residents laugh and enjoyed an occasional 16-ounce Budweiser.
"He's opened my eyes to a lot of things," Joann said. "There isn't a lot of care for people in this world, that I see. This world still isn't made for the handicapped. It's like some people don't see them, or want to."
Allen lives (and has lived) a full, enjoyable life. Don't let the wheelchair or his linguistic limitations fool you. He loves the New England Patriots and the Boston Red Sox and watches football, baseball and action movies on TV. He has never been to Fenway Park but has seen the Vermont Lake Monsters play in Burlington.
During the past decade, Alien has earned 10 bowling medals - one bronze, two silver, and seven gold - in the Vermont Special Olympics, and he will perform, via sign language, Robert Frost's "The Road Not Taken" during NCSS's April 23 fine arts night.
He's flown to visit his brother in Kansas. He's flown to Disney World. And he'll flash you the Peace sign with his fingers, and laugh with excitement, if you do it first.
"Allen has earned the right to live his life like everyone else: in a healthy way," his mother said.
"He had the will to live when he was only 2 pounds, 7 ounces. It scares me to death to see that jeopardized in Montpelier. Down there, its all about spending and cutting. They don’t know anything about people like Allen."
Insurance paid for Allen's hospital stay, when he was an infant. It took Lorraine 10 years to pay the remaining $15,000 balance.
During a four-month period of 2009 - January, March, June, and July - Alien incurred $25,000 in hospital expenses and $3,157 in medical costs. His prescription drug bill totaled just more than $8,000 for the entire year, plus another $500 in over-the-counter meds. Medicare and Medicaid pick up most of his tab, and his Social Security check covers his room and board with Joann.
Typically, if Lorraine isn't satisfied with her answers about Allen's care, she moves to the next person up - never across. "I go where I need to go," she said.
But during this state budget process, she finds herself in a new and uncomfortable spot, mired in precariousness.
"These kids with disabilities didn't choose to be the way they are," she said. "We have kids making bad choices about drugs and alcohol, every day, and the state pays for them to get help. Those people are encouraged to be the way they are, while people with disabilities are slighted. Constantly....
"You know, I have awful visions about Allen's life, if any big cuts come out of Montpelier, if we lost any services. At all. Through 55 years of challenges, I've never faced one like this. And I just don't think it's fair."
