The diagnosis of a chronic medical condition can be emotionally devastating. Often, however, people and their families realize only later the financial havoc that can follow.
With advances in medicine, more people face managing a chronic disease that years ago would have killed them.
Today, more than 49 million Americans live with disabilities, and for many their lives are far more rewarding than they imagined when diagnosed.
Situations vary widely for people with chronic conditions, or for those who are caring for a family member with such a condition. But focusing on the real issues–physical, emotional and financial–is critical, said Mary Harvey, a Beachwood financial planner who is also on the board of trustees of the Northeastern Ohio Chapter of the National Arthritis Foundation.
Tina and Paul Murray of Kenmore, Ohio, learned their son, Aric, had cerebral palsy nine months after he was born. Now 17, Aric is a student at Kenmore High School.
While the Murrays knew Aric would develop more slowly than other children, they also expected that, over time, he’d catch up. Aric now is a spastic quadriplegic and needs considerable care.
“We had no idea it would be long term,” said Tina Murray, who stayed home with Aric after he was born to care for him and his older sister, Rachel.
Aric started intensive therapy immediately, which was expensive and not fully covered by insurance. Paul was working in a temporary job at what was then Goodyear Aerospace and didn’t know that he’d be hired permanently at what is now Aircraft Braking Systems.
Tina Murray said they’ve received considerable support from their families and from local groups, but she credits three strategies for helping them manage: planning, asking for information and help, and doing things for themselves.
From the beginning, Paul tracked every penny spent or saved. These days, he does it on a computer spreadsheet and uses his calculations to estimate how much money to put in a tax- sheltered medical savings account for Aric’s medical expenses.
Tina said they’ve read everything they could on Aric’s condition and learned not to be shy about asking questions.
“I’ve stopped people in the mall and asked them where they bought their wheelchair,” she said.
New cars are out of the question. So Paul keeps their 1989 Plymouth Grand Voyager running. In addition to doing engine work on the minivan, he designed and made the restraints for Aric’s wheelchair using stock steel and a hood release he found in a junk store. The couple also built wheelchair ramps and made other modifications to their house.
“Life’s not over. That’s the top thing to keep in mind. There are wonderful times ahead,” Tina said.
Harvey, the financial planner, said a person’s priority should be gathering as much information as possible about options and alternatives. Answering some questions will help frame your search, Harvey said:
– What are your physical limitations?
– Is your disease progressive?
– Are family members available as caregivers, or do you need outside care? How much will that cost?
– How will your disease affect your ability to work?
– If you can’t work, how much have you saved? What other assets are available?
In a perfect world, more people would have disability insurance and long-term care insurance, because after a diagnosis such insurance is either expensive or impossible to get, said Harvey, whose clients include families dealing with chronic health problems.
With or without insurance, the next step is finding out what other benefits you might qualify for, and your first call should be to the Social Security office.
The federal program offers disability benefits to disabled workers younger than 65 who qualify for Social Security. Also eligible: a person who is disabled before age 22; a child if a parent covered by Social Security retires, becomes disabled or dies; and a person who becomes disabled before or within seven years of a spouse’s death.
People who have received Social Security disability checks for two years also are eligible for Medicare, the federal health insurance program that pays for many hospitalization expenses and related costs. Depending on your income, you or your child also may qualify for Medicaid, a state and federal health insurance program.
Medicaid and other state benefits and health insurance are helping to pay some of the expenses that Judi and Jeff Carman face with two of their adopted children who have severe medical problems. The Green, Ohio, couple had two sons of their own before heeding a spiritual call and adopting four children with special needs.
Their 9-year-old daughter, Mary, has spina bifida and complications resulting from having her legs amputated. Their youngest, 1-year-old John Paul, has a rare birth defect that caused many of his internal organs to form outside his body. Respiratory problems have delayed surgery that would help correct the problem.
More important, however, was their religious faith, and the skills and values they learned decades ago when they dealt with their eldest son’s chronic health problems caused by his premature birth.
“We had expected we’d be buying boats one after the other and thought we’d have summer vacations every year and that home we’d always dreamed of,” said Judi Carman, who is able to recall those days with some laughter. “They were the kind of expectations a lot of young couples have.”
Instead, the Carmans buckled down to serious budgeting and the realization that needs and wants were often very different things. In the cash-short days before the paycheck arrived, Judi would make an adventure of hunting up soda bottles with her sons, using the returned deposits to buy milk. Judi’s skills as a registered nurse also help.
Then and now, shopping the sales is a habit, and second-hand clothes are a sensible option.
“You have to get past the anger and the `I deserve more’ and focus on the important things,” Judi Carman said. “These kids are more important than anything money could buy.”
If you or a family member suffers from a chronic disease, your best resource is the telephone book, which has numbers for the various agencies you will want to call. The numbers differ by city and county.
– United Way (check your local phone book for nearest chapter). Good starting point to finding more specific information.
– County human-services department. Can provide information about Medicaid and Aid to Dependent Children programs.
– Social Security. Provides monthly benefits to those who qualify as disabled, a dependent of someone who is disabled or, in certain cases, disabled widows. People who receive monthly disability checks also qualify for Medicare, the federal health insurance program, after two years.
Other resources:
– “Be Prepared: The Complete Financial, Legal and Practical Guide for Living with a Life Challenging Condition,” by David S. Landay (St. Martins Press, 1998, $29.95). It offers guidance and tips on practical aspects of managing illness, disability and death.
– The Internet offers a huge number of sites with advice that can be useful, though not all of it is on target. One site aimed directly at issues of financial planning for families coping with chronic conditions is at www.specialneedsplanning.com.
The site is put together by two financial planners, both of whom have personal experience with family members with special needs.
