Jane Miller Laufer is in crisis mode – again.
Nearly 15 years after her son Matt was paralyzed in a devastating car crash on Interstate 95, Jane is by his side as he battles acute respiratory failure. The condition causes a build-up of fluid in the air sacs of the lungs, preventing proper exchange of carbon dioxide and oxygen.
For nearly eight months, Jane has worn two hats: devoted and loving mom to 38-year-old Matt and registered nurse/case manager for her gravely ill son. She’s where she needs and must be, but it’s been a huge emotional and financial strain on Jane and her family.
She’s living apart from her husband, Dan, and the couple have put their fledgling women’s clothing business LuLaRoe on hold. After exhausting 16 weeks of unpaid family leave time and paid benefits, Jane, 59, recently resigned as a full-time registered nurse to care for Matt. She pays Cobra for her health insurance.
“It’s been a huge financial strain,” she said.
“I’m exhausted physically, but more so emotionally on this roller coaster ride of good days and bad days,” she said. “Matt’s diaphragm, although not fully paralyzed, has atrophied over the years. He has chronic end stage respiratory failure. Slow, steady decline is anticipated. Matt’s need for continuous care will remain unchanged. At some point, he most likely will choose the option of hospice, but currently, he wants to try to enjoy whatever quality of life he can.”
Jane is a staunch advocate of paid family leave in Connecticut, saying that four months of unpaid leave is woefully inadequate when dealing with a chronic health condition. She supports caregivers being eligible to receive up to one year of paid family leave.
Though anyone can find themselves in the sudden role of caregiver, studies show the issue affects far more women than men.
About 66 percent of caregivers are women. The average caretaker is a 49-year-old woman who works full time and provides up to 20 hours of unpaid care to her mother. And while men are also caretakers, women provide 50 percent more time caregiving than men.
NOW’s Connecticut chapter supports paid family leave, which is being considered under a proposed state law. NOW-CT believes paid leave would give caregivers financial security during medical or family emergencies.
In Connecticut, employees can take up to four months of unpaid leave for a medical or family issue, such as an illness, accident or the birth or adoption of a child. But a proposed state law would provide a minimum of 12 weeks of paid leave for people who stay home for family or medical emergencies. (For a rundown of the proposal, see below.)
A handful of states currently provide paid medical leave. California, Rhode Island, Washington, New Jersey, and New York – and the District of Columbia – have laws that provide paid family leave laws.
A public hearing on the proposed bill in Connecticut is at 2:30 p.m. March 8 at the Legislative Office Building in Hartford. Bill supporters are urging residents to attend the hearing to share their stories with legislators.
Jane said having to worry about losing her job was an additional burden while caring for Matt. She said she was filled with anxiety about quitting her nursing job, but had no choice.
If she couldn’t provide round the clock nursing care, Matt’s only option would be admission to a nursing home that accepted patients on ventilators. Jane said that was out of the question.
“There is no way I was going to put my 38-year-old son in a nursing home,” Jane said.
The Laufer’s life changed permanently in May, 2003, when Matt was paralyzed in a car accident while driving to work on Interstate 95 in Fairfield. With traffic at a standstill due to an accident ahead, Matt sat in gridlock in the center lane. Glancing in the rear view mirror, Matt saw an 18-wheel truck barreling toward his car. The truck struck with such force that it pushed Matt’s car beneath an 18-wheeler ahead of him, pinning the car beneath the trailer bed.
Matt’s injuries were catastrophic and permanent: six of seven neck vertebra were crushed, paralyzing him from the shoulders down. He was a paraplegic at age 23, but determined to live as independently as possible. After living with his parents for two and a half years and being cared for by Jane, he moved into his own house, where he lived with the help of aides for his basic needs.
His health took a sharp downward spiral last August when he was hospitalized for acute respiratory failure. A tracheostomy tube was inserted to create an opening in his airway, and he was placed on a ventilator. Jane said the disease is slow and progressive.
“I feel fortunate to be able to provide the care that my son requires,” Jane said. “But the hardest part about being a “Nurse-Mom” is knowing that the outcome will not be positive for Matt in the long run. Sometimes, ignorance is bliss.”
BY THE NUMBERS:
Below are highlights of the proposed Family & Medical Leave Insurance Program being considered in Connecticut.
REASONS FOR TAKING LEAVE
●A serious health condition
●The birth or adoption of a new child, or foster care placement
●To provide caregiving to a family member with a serious illness
●To serve as an organ or bone marrow donor
●To care for an injured service member
●For issues associated with domestic violence
●Must work for an employer of two or more
●State and municipal employees who are covered by collective bargaining contracts can opt into the program through the collective bargaining process
● Self-employed people may opt in
● Includes job protection for workers who have worked for an employer for at least 6 months and 500 hours
● An employee must have earned $2,325 in the highest earning quarter within the five most recently completed calendar quarters
● Earnings may be with multiple employers
● Workers may use leave for the reasons defined in CT’s FMLA with the addition of caring for a sibling, grandparent or grandchild, a child of any age and any other individual related by blood or whose close association with the employee is the equivalent of a family relationship
NUMBER OF WEEKS
● Employees may take up to 12 weeks of paid family and medical leave. An employee can take two extra weeks if there is a serious health condition with a pregnancy that results in incapacity
● The waiting period before using leave is 7 days
● Employees will receive 100% of their weekly earnings, up to a cap of $1,000/week.
Source: Connecticut Campaign for Paid Family Leave.
Carolyn Milazzo Murphy is blog editor for NOW-CT.