Dennis Thompson / For The Bulletin

Families face a series of complex financial decisions when a loved one falls victim to injury or illness and is left permanently disabled.

How do you make a monthly budget? How much should be set aside for future expenses? Should a trust be set up? What can be done to maintain the person’s quality of life?

“These families incur expenses that are hundreds of thousands of dollars over their lifetime above what regular families deal with,” said Mark Mintz, a senior financial adviser and certified special needs adviser at Merrill Lynch in Bend. “A wheelchair alone is a $50,000 to $60,000 piece of equipment. That’s just the wheelchair, not including buying the van, having the van outfitted. You can’t imagine the financial hardships.”

Surprisingly, the field of financial planning for the disabled or chronically ill has not received much professional interest from CPAs and other financial experts.

This means families often are on their own when trying to figure out how to pay today’s medical bills or plan for a future in which a loved one needs continued assistance but the rest of the family has passed away.

“There aren’t a lot of certified financial planners who practice this specialty,” said Hal Wright, a financial planner in Centennial, Colo., and a spokesman for the Financial Planning Association. “Consequently what happens is families face an overwhelming financial commitment due to intensive medical or care needs, but they don’t know how to develop a plan to do so.”

Making a plan

Geoff Babb and his family first faced this problem about eight years ago, when he suffered a debilitating stroke. He now uses a wheelchair and has very limited mobility.

“Luckily I was able to come back to work after my stroke,” said Babb, 55, of Bend, who works as a fire ecologist for the U.S. Bureau of Land Management. “But I’ve got two kids in college, and since the stroke I have to be cognizant of thinking ahead. We have to make sure we’re well-invested and focused on our finances.”

Babb learned about Mintz, who specializes in helping families facing long-term disability or ongoing medical issues.

“We’ve been working with Mark about six years,” Babb said. “He’s really helpful to the wife and I about managing our finances and making sure we’re putting money into the right places and thinking ahead for times when I may not have an income or my wife may not be around to help me.”

Mintz has his own stake in pursuing this interest. “I have two special-needs family members myself,” he said. His wife has multiple sclerosis, and he had a brother with schizophrenia who recently died.

“It’s life-changing,” Mintz said. “We don’t read a book or have an inherent knowledge what do to. It’s very much groping around, finding out for yourself, needing guidance and locating people who are very passionate about it.

“That enables me to have some insight into the type of things the family may be struggling with financially but also have some insight into things that they may need to deal with in the future, but also some things they may be dealing with emotionally,” he said.

Bringing in a financial adviser generally costs about 1.5 percent of a family’s assets per year, but the fee schedule can flex depending on the size of their portfolio or the amount of consulting they require.

In Babb’s case, the family needed to remodel their house after his stroke to make it wheelchair-accessible, which required refinancing a mortgage to pay for the work.

He ticks off the expenses he has to juggle now — medical bills, physical therapy, prescriptions, personal training. His wife puts extra miles on the car shuttling him around. He had to buy a wheelchair and specialized fitness equipment for his home.

“I just had some planned surgery in May that cost me some extra money,” Babb said. He has a pump implanted in his abdomen that feeds muscle relaxant into his spine. It was put in seven years ago, and its battery life is about seven years, so doctors had to go in and replace it.

Unmet need

Why aren’t there more specialized financial planners around to help folks like Babb? Wright sees it as a combination of two factors — a lack of available education and a lack of understanding regarding the need for such services.

“There’s no course of study or body of technical knowledge that financial planners can use to become expert in this field. It’s an educational problem,” Wright said. “Second, I don’t think a lot of financial planners understand the extent and size of this market. There are 51 million people in the United States with either a cognitive disability or mental illness. One in 12 American families have a member with a disability.”

Mintz usually comes into contact with clients after they are referred by an attorney.

His process focuses on helping the family map out long-term plans. He helps them review the financial resources they have in place and considers resources available to them that they may or may not be using yet.

“We go into taking a look at how their own personal financial resources are being used, making recommendations on that, and educating them as necessary on government programs that are available and gaining an understanding of whether they are using them or not,” he said. “Then we circle back around to the conversation with the attorney they may have been having.”

These plans not only involve finances, but also the person’s medical needs and the emotional needs of both the disabled person and the person’s family, Mintz said.

Mintz helped Babb figure out how to best invest the family’s money and prepare for future expenses. He steered Babb toward a home equity loan to help raise money for the kids’ college tuition.

“We know really soon we need to start thinking about some long-term care options and things like that. Trusts, for instance. Things that might be helpful to us should our income change,” Babb said.

Mintz said he hopes to spread the word that there are financial planners like himself, ready to help people in need.

“It’s important to let families know there are professional people who care to help them out and guide them through the financial resources available,” he said.