The Money Trail

Money — its a big issue when youre coping with a neuromuscular disease. The search for funds to cover needed equipment, home modifications, drugs, treatments and other expenses, and the fight to get benefits from insurance companies and government agencies can be as stressful as the effects of the disease itself.

In this issue, Quest attempts to provide a map of some of the traps, detours and dead ends that make up the tortuous Money Trail — as well as some of the rest stops and satisfactory destinations to which it can lead.

"Learning to Squawk" offers strategies for making your voice heard and getting what you want. "Keeping Your Insurance Coverage on Track" looks at solutions to some common insurance hassles, including those that may arise with Social Security, Medicare and private insurance. "Where Is All the Money?" tells how several individuals creatively found funds to cover their needs.

"From Where I Sit" presents a personal reflection by Kimberly Sullivan, parent of a son with spinal muscular atrophy, about "The Middle-Class Trap" — a condition she describes as making too much money to get assistance to buy medical necessities, yet not making enough money to pay for them yourself, without sacrifice. Its a familiar story for many.

Tying it all together is an extensive list of resources. There youll find further roads to take and stops to make —including MDA —that will give you information and assistance. We hope the information in this package will lead to a happy ending to your trip down the Money Trail.

Learning to Squawk

by Christina Medvescek

Mama might have taught you to be modest and retiring, but those qualities dont cut it when youre fighting the system.

Successful advocacy demands that you believe youre entitled to have what you want, and that you squawk loudly enough to get it. But squawking is an art. Rude, angry squawking can lead straight to the chopping block.

It takes finesse coupled with persistence — squawking in perfect pitch, if you will — to end up with the golden egg.

Two Types of Advocacy

Therese Nadeau with Sassy

You might be advocating for a larger cause that affects many people, such as federal health care legislation. Or, you might be self-advocating for yourself or a loved one over an issue that mainly affects you, such as an insurance coverage denial or school placement. Both are demanding, but in many ways self-advocacy is the tougher.

In self-advocacy, youre rocking the boat and insisting your needs be met. Even if youre right, you may worry that youll look like a whiner or make people angry. And even if none of that bothers you, self-advocacy is time-consuming. While a large cause may have an organization behind it, in self-advocacy if you dont do it, no one will.

Therese Nadeau of Glastonbury, Conn., knows well how hard it is to self-advocate. The 33-year-old social worker, who doesnt let type 2 spinal muscular atrophy get in the way of her busy professional life, has been "doing advocacy work in different ways all my life." But when she experienced firsthand discrimination, Nadeau learned that "advocating for yourself is pretty different. I really struggled."

While getting her masters degree in social work, Nadeau took an internship as an elementary school counselor — and uncovered a little pocket of prejudice.

"They immediately stereotyped me as someone who needed a lot of assistance and who couldnt provide assistance to a child," she says. People refused to get heavy files from high drawers, or even help her take off her coat. "They basically said it wasnt in their contract to do that." Their bottom line: She couldnt do the job.

"I actually was working quite well with the children, but I wondered if I was capable of doing a job like this or if I even wanted to go into social work as a career," she recalls. "I felt embarrassed. I wanted to run away."

Nadeau ultimately decided to stay with social work but switched to a different internship. She says it took her a couple of years to "realize how important it was to face all that I experienced head-on rather than run away from it — a lesson that taught me how to be a much stronger advocate today.

"I realized the importance of addressing the issue. I was afraid to ask for help. I thought if it didnt appear like I needed help it would be OK, but that wasnt the case. When I did ask for help, I could accomplish so much more. I learned to be really open about what it is I need and why — and also about what I have to offer."

Self-advocacy can be scary and uncomfortable, but ultimately rewarding, Nadeau found. "Sometimes you say, Ive tried and this isnt happening. But as long as you try the best that you can, youve made some kind of difference."

The Rules of the Game

Whether self-advocating or addressing a larger cause, there are some strategies that can make your fight more effective:

Before you start to fight, sharpen your sword.

First of all, know exactly what you want and why. Youd be surprised how many people, caught up in blaming, go into battle without knowing this.

Next, know your rights under the law. Make copies of specific policies or codes that apply to your situation.

When youre appealing a denial, make sure you have all needed documentation from your doctor and that his/her notes are legible. Be sure you have objective data (test results) in addition to subjective data (opinions and personal experience).

Gather research on the effectiveness of the treatment or equipment youre requesting. You may want to make a video showing how you function with and without the requested equipment, or keep a diary documenting your condition before and after starting a certain medication.

Seasoned advocates keep three-ring binders containing all correspondence, test results, copies of laws and research reports, and a running diary that lists names, dates and outcomes of all contacts over the problem. This is an extremely powerful tool.

This kind of preparation enabled Kristine Biagiotti of Franklin, Mass., to successfully get insurance coverage for the over-the-counter supplement coQ10 for her 8-year-old daughter, Kayla, who has a mitochondrial disease (see "Keeping Your Insurance on Track"). At the appeal hearing, the insurance lawyer tried to "rattle me with all the legalese wording," but found her unshakable.

By being very prepared and understanding the part of the state regulations she was arguing, and because she had all the details in place (medical reports, doctors testimony, research articles, etc.), "it boosted my confidence so I could not be intimidated and could stand my ground on my specific case."

Remember that communication is a two-way street.

Communication consists of talking and listening. A common mistake is to do the first and not the second. Careful listening enables you to learn more about the other sides position and uncover clues toward a solution. It also shows respect — which tends to lead to respect being given back.

To become a better listener, get in the habit of summarizing what the other person has said: "Let me see if I understand this correctly"

Dont speak in anger.

Make every attempt to sustain relationships, especially with people youll have to deal with again. "Its best to work in a friendly, helpful way," says Mick Mickler, 47, of Cedar Creek, Texas, who has Duchenne muscular dystrophy. Mickler runs Disability Advocates, an association that helps people denied government benefits.

"Approach them with an answer rather than a complaint," he advises. Even though the problem affects you personally, dont take it personally. Be as professional as possible, he adds. "Youre taken with much more credibility if you act credibly."

Put a human face on the problem.

	John Hunter and family

Tell a story, advises John Hunter, 40, of Litchfield, Ohio, who has amyotrophic lateral sclerosis (ALS or Lou Gehrigs disease). Hunters initial request for Social Security Disability Insurance (SSDI) was denied, and a clerk admitted that his family might get death benefits before he saw disability benefits.

Outraged, Hunter launched a quest to get the SSDI approval process changed from the top down. In lobbying members of Congress in Washington, he told how the denials made a bad situation worse for his wife and two young children. He says this helped to "make it a human story they can connect with. Tell how it affects you and your family. They were very responsive to that."

Seek human contact.

Anthony Okoro

Whenever possible, go for face-to-face interaction. Anthony Okoro, 50, of Washington, D.C., wrote a ream of letters trying to get housing assistance when his polymyositis forced him to quit working.

"I kept getting the runaround. They wouldnt answer my letters. Finally I just went to the housing authority commissioners meeting and told them about my need for help to pay my rent. Three months later I got a letter saying I was approved for Section 8 housing assistance."

Okoro continues to employ this approach when dealing with problems or even filling out routine forms. "I dont call or write a letter, I just show up. I get acquainted with the workers, so they know me and I know them."

Talk to the people in charge.

If the person with whom youre dealing cant answer your questions or keeps citing policy, ask to speak to the supervisor. Politely move up the power chain until you find the person with authority to make decisions.

Enlist their help.

Sometimes, the "other side" isnt so much an enemy as a befuddled bureaucracy. Assume you both want to see this problem worked out successfully. State your case and ask, "Can you help me get this straightened out? What do you think I should do? Who should I talk to?"

Making allies out of enemies is your strongest suit.

Get educated.

Network with others to gain skills, contacts, support and information about their experiences. Try to find some advocacy training. (Check your local chapter of The Arc, which sponsors training for parents of children with disabilities. See "Money Trail Resources.") Biagiotti says advocacy training "greatly helped me with planning my case."

Nick Dupree savors his victory over Medicaid outside the Federal Courthouse in Montgomery, Ala. Kiichiro Sato/Mobile Register

Get the media involved.

Not every injustice is a front-page story. But when it is, the media can be a powerful friend.

"I couldnt have done it without the media," says Nick Dupree, 21, of Mobile, Ala., who has an undiagnosed, severe form of muscular dystrophy. Dupree successfully fought a Medicaid age requirement that would have eliminated his in-home nursing care and forced him into a nursing home when he turned 21. His advocacy ended up sparking wholesale changes in Alabamas Medicaid rules. (For more on Duprees story, see www.mda.org/news/030213nickdupree.html.)

Dupree launched a Web site (www.nickscrusade.com) and an articulate letter-writing campaign, but it wasnt until the media got involved that his message was heard. "Letters raise awareness but they dont necessarily raise the level of caring," he says. Legislators care more "when a reporter puts them on camera and says, OK, what are you going to do about this?"

But Dupree admits its very hard to get the media interested in a story. Connections often are the key. The wife of a friend knew a local TV reporter who initially covered his quest; a national disability rights advocate "knew a guy who knew a guy who knew Joe Shapiro at National Public Radio."

Show the right stuff.

"Life is unfair," Okoro says. "But the big mistake people make when they are being treated unfairly is they give up and they think that the whole world is against them."

Have a "tough mind," Okoro urges. Hang in there. "One cannot expect magic overnight. Everything takes time. Be patient, persistent and have a positive attitude."

It really helps to "become comfortable with yourself as a person, comfortable with your disability," Nadeau says. "Know what your strengths are and what you can bring to a situation."

Advocacy isnt for sissies, Dupree observes wryly. "I dont envy people that are having to do this. It takes a lot out of you." The stress of his campaign briefly landed him in the hospital with an opportunistic infection.

But the stress didnt decrease his motivation, he says. "You have to care enough to do it every day. Thats what you need more than any strategy. Do something, write somebody, every day."

Is it worth it? "Yeah, its worth it," he says. "It would have been worth it even if I hadnt won, because its important to make a stand and raise awareness. Its the right thing to do.

"It doesnt matter if you win, you just gotta try."