Disability dilemma

December 17, 2001

Bil Jacobs and his wife, Tama, sit with their son, Michael, 7, in their Hermosa home on Tuesday. To qualify for financial assistance for their son, who has cerebral palsy, the Jacobs must not exceed government-imposed earnings limits.

By Jennifer Reeder
Special to the Herald

A family’s struggle to raise a son with a disability has attracted the attention – and research power – of local college students.

Last Monday, students from an education class at Pueblo Community College presented research they conducted to Tama and Bil Jacobs, parents of 7-year-old Michael, a first-grader at Needham Elementary School who has cerebral palsy and uses a wheelchair.

The information pertains to the family’s main dilemma: how to work without exceeding earning limits set by two government programs. Through Medicaid and Supplemental Security Income, the government provides health care and financial assistance to families like the Jacobs to help with medical expenses associated with their son’s disability – from wheelchairs to physical therapy and medication. The programs do not cover expenses for adaptations to their home, like lower sinks, enlarged doorways and wheelchair ramps.

Cerebral palsy is paralysis that often occurs in infancy because of brain injury. In Michael Jacobs’ case, it may have been caused by a mild stroke he suffered, though doctors aren’t sure when it may have occurred. The first sign that led to his diagnosis was a seizure he had when he was 3 days old. But that didn’t deter his family.

"When something like that happens, you just go with it," Mrs. Jacobs said.

The Jacobs moved to Durango from Phoenix five years ago for the quality of life the community had to offer, Mr. Jacobs said.

But Colorado Medicaid laws place income limits on the amount of earnings and assets a family can have in order to qualify for benefits from the federal government.

"I’m 50, and I’ve worked all my life, fought in the war, had the American dream," he said. "Now all of a sudden, I can’t work because if I do, we lose Medicaid."

Mr. Jacobs was a computer designer at Blue Line Special in Durango – refusing raises and working at reduced wages to stay eligible for benefits.

He took medical leave in June for bypass surgery, and his wife had to go to work for a home health agency to support the family. Now if he goes back to work, their income will exceed the three-person household limit of $2,400 a month and the $5,000 asset limit.

"We need the Medicaid but it’s hard to live on the income we need to be eligible for (Supplemental Security Income)," Mrs. Jacobs said.

The waiting list for a state Medicaid waiver to lift limits on earnings is about three years, and the family would not be able to collect Supplemental Security Income or Medicaid during the wait period. Because Michael Jacobs is scheduled to have surgery in February, and his wheelchair needs repairs, the family cannot risk living without the programs, Mr. Jacobs said.

"I don’t want to get in a situation where we have to file for bankruptcy," he said.

Mrs. Jacobs stressed that she doesn’t harbor negative feelings for legislators, and that Rep. Mark Larson, R-Cortez, has been particularly helpful.

"I’m being as vocal as I can at the state level," Larson said. "We should allow families like the Jacobs to go ahead and work and be able to support their son – it’s not like they’re going to go out and become millionaires overnight and bilk the system."

Lynda Morris, an adjunct professor at Pueblo Community College, met Mrs. Jacobs at church and asked her to speak to her students about the challenges facing families of children with disabilities. Her class, First Start: Including Children With Disabilities, is a requirement for students in the early childhood education program.

"It’s important for students to put a face to a disability," Morris said.

The students were so impressed by Mrs. Jacobs’ presentation that when asked to create a "meaningful project that would live beyond the class," they decided to research information and resources to help the Jacobs, Morris said.

The students presented their findings to the family last week, right before their final exam.

Student Meredith Cox said the class broke into teams to research legislator contacts, benefit-program rules and how to write petitions.

"It gave us a lot of new information about how to better introduce and include children with disabilities," Cox said. "You need to study up on each and every case."

Mrs. Jacobs said the information will be helpful as she continues to advocate for an end to what she sees as a Catch-22, and the right to earn a more livable income and still qualify for government aid. She would like to see the income caps raised, decent insurance for "uninsurable" children and waivers for all who qualify.

"Tama is the biggest advocate for her son because she believes in him being as independent as possible," said Jackie Morlan, director of family and children supports at Community Connections, a nonprofit organization that provides services to families and children with disabilities. "She doesn’t have pity for him, and it shows."

Mrs. Jacobs said that the asset limit of $5,000 is too low and means the family can’t save money for her son’s college education. Michael Jacobs has aspirations of one day becoming a movie director, she said.

"We’re doing this for Michael," she said. "We don’t want him to have to be on the system when he’s older – he has a promising future."