For many brain injury survivors and their families, a key part of the healing process is advocating for change in public policy. Through diligent research, grass-roots support, and an unwavering pursuit of legislative attention, families are taking on the task of affecting the legal system.
Compiled from interviews with Alan Mayer, Alice Demichelis, Inta Hall and Graydon Klee
Solace for those families who are marred by the crisis of brain injury can be found in a forum not typically accessed for therapeutic intervention. It is in the halls of Congress that some families and survivors of brain injury have been able to work through their hurt and frustration.
Alice Demichelis, a mother whose grown son sustained frontal lobe and lower brain stem damage, puts it this way: “The advocacy is the healing.” She refers to actions taken by families and survivors in the quest for social and political policy that will keep pace with the technological advances which are now saving brain injury patients for lives of questionable quality.
Demichelis, of suburban Washington, DC, pounds the hallways of Congress on behalf of the National Head Injury Foundation. Demichelis’ brain-injured son, formerly a public accountant with a major accounting firm, works right along with his mother in the seemingly endless fight for legislation that addresses the problems facing the survivors of brain injury and their families.
Citizen action in pressing for quality-of-life programs is a must. Its success has been shown repeatedly as Congress has reacted to proper health-associated relief programs. Moreover, the therapeutic value of involvement is now being realized.
This underlying power of legislative advocacy is echoed by Inta Hall, mother of a brain injury survivor and lobbyist/activist in Massachusetts. “Get family members involved,” she says. “From a rehab point of view, it’s helpful that you can do something, instead of just dealing with pain.” And while focusing their energy, patients and families will be participating in one of the basic tenets of Constitutional government – the right of petition.
In the case of brain injury, needed legislation is currently sought on preventative measures such as air bags and trauma prevention, medical leave, reimbursement for uncompensated care, long-term care, reclassification and redefinition of brain injury by the insurance industry, and education in traumatic brain injury (TBI). There’s also a need for a specific agency to handle concerns of those traumatically brain injured.
MORE THAN JUST SURVIVING
Graydon Klee was a 41-year-old Republican political consultant and fund-raiser in Orange County, California. He knew elected officials and had the know-how to successfully unravel bureaucratic red tape. In his own words, he “was conversant with bureaucracies.”
But that was before he was run down by an automobile. Today, two years later, Klee is still unable to return to work and after losing his marriage has gone to live with his mother in Los Angeles. Suffering from post-concussive syndrome, Klee tires easily, has visual difficulties, and takes Dilantin for seizures. He is undergoing neuro-biofeedback treatments with the hope of eliminating his seizures.
A few months after his injury, looking for a constructive outlet for his frustration and idle time, Klee took a special interest in the public policy arm of the Southern California Head Injury Association. Since, his days have been driven by a self-proclaimed mission to increase public awareness of traumatic brain injury and the accompanying problems for survivors and their families.
He’s made his advocacy work a “daily activity.” “Hardly a day goes by that I don’t think about taking care of correspondence to legislators or conferring with people on legislation,” says Klee. “I find myself all consumed in this.” His first policy-making cause was for the helmet law in the California state legislature – a bill that initially failed, though he now fights to get it reintroduced.
Klee runs his campaign efforts out of his mother’s apartment. He relies on a word processor to keep track of all his legislative sources and networking connections. “I really like the computer,” he says. “It’s at least as smart as I am and it remembers everything.”
An “early bird,” Klee awakens about 6:00 a.m. to begin his lobbying work. The break of day serves a dual purpose: he gets less expensive long-distance phone rates – an important consideration since he pays his expenses out-of-pocket, and he likes to reach people “when they first come into their offices so they’ll be in an uncluttered mood.” He also adds, “I’m fresher and have not been bruised by the day yet.”
Klee averages five calls a day, many of them to the East Coast. He tries to keep the conversations brief, five to 10 minutes – but some calls can take up to a half hour. Although he doesn’t follow a rigid schedule -unless of course he’s in Washington and has appointments booked, Klee is busy making contacts “all day, off and on.”
This past June, while in Washington, DC, for the National Head Injury Foundation family meeting, he set aside time to lobby the Hill for the Brady handgun legislation – which has since passed. Before leaving Washington, he also called Sens. Bob Dole and Pete Wilson and Rep. Newt Gingrich and met with them to emphasize the importance of the trauma legislation.
In December, he went back to Washington “just to keep in touch.” Klee, who foots all his own lobbying expenses including air fares, says, “It’s worth it to spend a couple hundred extra dollars and go out of your way a little bit.”
While in L.A., he frequently attends meetings of head injury support groups. “They help me and I help them,” says Klee, who views these groups as a pool of people who have a vested interest in pending legislation. “I want to identify the other people to be in touch with at the appropriate times when there is a legislative campaign heating up. I want to let them know how simple it is to make your vote count twice-first at the polls and then by keeping in contact with the legislator to keep him informed on the issues.”
With Klee’s input, the legislative committee of the Southern California Head Injury Association is developing a specialized packet. It will contain fact sheets and personal stories to focus legislative attention on brain injury and its impact on the individual as well as on society. “This will enable us to lobby them more effectively,” explains Klee.
Through it all Klee essentially works alone, with some assistance from his mother and “the moral support [coming] in bits and pieces from everyone I deal with,” he says. “I don’t encounter anything substantially negative – not on the order of losing the war, or even the battle. It’s more on the order of the field is muddy and we have to cross it,” concludes the optimistic Graydon Klee.
Where to Begin
While every American citizen has the right to lobby his legislators under the First Amendment, where does the enthusiastic, but inexperienced, advocate begin? What should he expect from the system? What kind of commitment is involved?
The first thing you should tell families is to define the public issues which are specific to TBL Help families and injured individuals gather specific facts and figures. They can begin simply by contacting the National Head Injury Foundation or one of its local chapters. Point out to the families that if they are going to lobby successfully, they must be armed with accurate data. Their personal histories alone – as devastating as they may be – are not enough.
As legislative liaison for the Massachusetts Head Injury Association, Hall has learned that the emotional hook will get the legislator’s attention, but she says that families must then be prepared to follow through with the facts. They need correct information at their fingertips.
Creating Grass-Roots Support
First, family advocates should court the grass roots. The key to a successful lobbying campaign is generating informed and consistent pressure in a legislator’s home district. “Politics is local. … When you get that local-based interest, that will be translated to dollars,” says Alan Mayer, a member of the Virginia House of Delegates.
Urging families to get involved on home ground is not just simplistic rhetoric. “Head injury people have got to do a better job of advocacy at the local level,” advises Mayer. He believes that all legislation begins when an individual decides to do something about his deep concerns. And it is there, in the local venue, that individual voices can be organized into a chorus heard by their legislators all the way to Washington.
Even though family advocates are concerned with a relatively small segment of the national population, they can organize a successful lobbying campaign. Families and survivors of brain injury are a special interest group that can increase their impact on Capitol Hill by cultivating pre-existing or creating new networks of people in as many areas of their city, state, and country as possible.
Families should canvas their “spheres of influence” – the local chapter of the National Head Injury Foundation, church groups, the local chapter of the League of Women Voters, Lions Clubs, and other organizations. Each contact will lead to another, until family activists have developed their own netWork and plugged into others. Not everyone will be a dynamic public speaker or an aggressive lobbyist, but tenacious researchers and other kinds of support are also needed.
Recruiting Allies
Once advocates have created a community netWork of like-minded individuals, they need to go back to those very people and look at them closely. Perhaps they include city council members or members of the Chamber of Commerce. Ideally, activists can organize five or six of these individuals into a committee and then visit the lawmakers.
“Anyone in elected office will listen to a constituent and respond in a positive way if he can,” says Mayer. “The issues surrounding brain injury found me. The local hospital people asked me to get involved in making institutional changes in the way the Virginia state government deals with programs – the whole range of issues when faced with TBL.”
Mayer, who serves on the health committee in the Virginia legislatUre, was instrumental in creating the Byer Commission, which identifies the population affected by traumatic brain injury and creates a system of community service boards. Mayer is also responsible for creating a pilot case management program to give individualized care and direction to the families of brain-injured people, along with a pilot program for personal assistance care which attempts to give traumatically brain-injured persons independent-living status.
Making Contact
There is nothing complicated about making contact with legislators if one is well-organized, professional, and direct. Graydon Klee, a former Republican political consultant and a survivor of a brain injury now involved in lobbying for issues of interest to the brain injury population, outlines a very direct methodology. If people want to be heard, Klee advises first and foremost to identify elected officials on the local, state, and national levels. Next, he says, phone the district office of the elected official and let your interests be known. Activists should ask to speak to the person in charge of health issues and make an appointment with the legislator or legislative aide.
Klee encourages new advocates not to be put off if they don’t have a specific contact or introduction. Any phone number can be turned into an open door. One shouldn’t hesitate to make a cold call, followed by a short letter which includes the advocate’s name, address, and phone number, he says.
If possible, Klee thinks, it is most effective to spend a day on Capitol Hill or at the state capitol and to invite key legislators or their staff members dealing with health issues to breakfast or lunch. Survivors of brain injury and family members should be included in these meetings – a point which national lobbyist Alice Demichelis stresses.
In presenting their agenda, advocates need to ask if their specific concerns are part of existing legislation, says Klee. If so, they should then ask if that legislation is before any committee and express informed concern over the passage of such legislation.
SOCIAL WORKERS MUST LOBBY TOO
The legislative office of the National Association of Social Workers (NASW), under the direction of Susan Hoechstetter, has produced a 26-minute training video for social workers interested in the lobbying process. The video is available to local NASW chapters; however, supplies may be limited.
In this program, New York Congressman Gary Ackerman, whose wife is an NASW member, delivers an overview of the lobbying process and advice on how to lobby legislators in Washington. “He finds social workers to be excellent lobbyists,” explains Hoechstetter. “They come with both a caring sense and a professional sense and are natural lobbyists.”
Ackerman appeals to social workers’ concern for change. “Each and every one of you should seriously be considering yourselves as lobbyists if you want to put in place the kinds of changes you feel are necessary,” he says to viewers. “I have found most of the social workers I know to be very effective lobbyists, even though many don’t realize that they’re lobbying.”
Hoechstetter periodically calls upon the 130,000 strong membership of the NASW to support her staff’s efforts in Washington. Referring to last year’s campaign to pass the Family and Medical Leave Act, she expIains, “We sent out an alert to our legislative network around the country to let them know who to write to, when the bill was coming up for vote, NASWs position on it, which members were wavering and targeted, etc.”
Hoechstetter coordinates all lobbying efforts of the NASW, working for the interests of the profession and the clients they serve. “We go to Congress for things both broad and narrow,” says Hoechstetter. In addition to working for passage of the Family and Medical Leave Act, NASWs big concerns this session of Congress are reimbursements under Medicare for social workers and comprehensive national health care. Many of the bills they support will benefit brain injury survivors and their families.
Survivors and family members should be specific when asking for support of an issue, he says. This means identifying the bill by number; however, when a bill is reintroduced in a new Congress, it will be assigned a different number than it had previously.
Phone calls or meetings should be followed up with a letter. This will add weight and credence to advocate interests, says Klee, who is a strong believer in such simple courtesies.
Presenting the Issue
It is essential to gain the trust of the legislators, a point which Massachusetts lobbyist Inta Hall emphasizes. The lobbyist holds the key to a legislator’s confidence when he is knowledgeable and prepared, she says.
Family activists must find the answers to anticipated questions as well as objections. They should know whether similar legislation has been introduced before, and if so, what happened to it. If it didn’t become law, why not? The lobbyist needs to know who the allies are – as well as the opposition. If an advocate doesn’t know an answer, he or she should offer to get the information as soon as possible.
In presenting an issue, family advocates must realize that this is only one of the many pressing issues of concern to the harried legislator. It’s a good idea to prepare a hand-out, a one-page outline, for targeted legislators, recommends Demichelis. Hall offers similar advice: “Produce small information at first. Then use the emotional argument to get the personal attention.” When Hall approaches a legislator, she explains her situation, but assures him that she’s not there for sympathy and explains why the TBI group needs help.
Advocates must be concise. “Try to limit oral presentations to five minutes,” says Demichelis. “Don’t try to make more than two or three points. And talk in human terms, but try not to be emotional.” Families and survivors can tell their stories but it is best when their story serves as a point of departure for delivering the facts.
Demichelis also advises, “Don’t use technical jargon. You may understand what all of the terms or acronyms relating to brain injury mean, but they confuse legislators, who must be generalists.”
Public hearings are also critical opportunities to present the facts and gain the support of lawmakers. For example, Rep. Jim Bates, who was sponsoring the trauma bill, was able to persuade Rep. Henry Waxman, as chairman of the Health and Environment Subcommittee of the Energy and Commerce Committee to hold a hearing on the trauma legislation. Once the chairman agreed to hold the hearing, it was up to lobbyists to provide the staffs with guidance and research.
CONTACTS
Lobbyists and Legislators Supporting Laws for Brain Injury Victims
Lobbyists
Susan Hoechstetter, Legislative Director
National Association of Social Workers
7981 Eastern Avenue
Silver Spring, MD 20910
(800) 638-8799 or (301) 565-0333
Alice Demichelis, Legislative Liaison
National Head Injury Foundation
1140 Connecticut Avenue, Suite 812
Washington, DC 20036
(202) 296-6443
Your congressman or senator at his local district office or:
U.S. Capitol
Washington, DC
(202) 224-3121
To express support on health-related issues and to determine status of legislation:
The Hon. Henry Waxman, Chairman
Health and the Environment Subcommittee of Energy and Commerce Committee
2415 RHOB
Washington, DC 20515
(202) 225-4952
Family and Medical Leave Act
The Hon. Chris Dodd
U.S. Senate
Washington, DC 20515
(202) 224-2823
The Hon. Patricia Schroeder
U.S. House of Representatives
Washington, DC 20510
(202) 225-4431
National Highway Fatality and Injury Reduction Act
The Hon. John Chaffee
U.S. Senate
Washington, DC 20515
(202) 224-2931
The Hon. Jim Cooper
U.S. House of Representatives
Washington, DC 20510
(202) 225-6831
Emergency Medical Services and Trauma Care Improvement Act
The Hon. Ted Kennedy, Chairman
Labor and Human Resources Committee
428 Dirksen Senate Office Building
Washington, DC 20515
(202) 224-5375
The Hon. Alan Cranston
U.S. Senate
Washington, DC 20515
(202) 224-3553
The Hon. Jim Cooper
U.S. House of Representatives
Washington, DC 20510
(202) 225-6831
Raising Visibility
Visibility of the issue is essential and can be accomplished by contacting and cultivating journalists and suggesting story ideas to them. Again, research pays off.
Advise families to look for a journalist or assignment editor who already has a vested interest. “You must always remember that your voice is only one of many and it’s up to you to make it heard,” says a Washington government relations consultant, Ernest Wittenberg.
“Let them see what the problem is. We’ve been a stepchild to mental retardation and related conditions. This is a public health issue that crosses other disabilities, such as blindness and deafness,” says Demichelis.
It always helps visibility if activists can get celebrities to support the cause. In Massachusetts, Hall got pro-hockey star Bobby Orr involved. He agreed to do some public service announcements after she took him on a tour of brain injury facilities. “People are moved by that,” Hall explains. “Hold a press conference in the facility and invite legislators or their aides,” she suggests.
Also, the person who is comfortable expressing himself in writing should be encouraged to pen a 600 to 800 word op-ed piece and send it to his hometown newspaper. If the advocate finds a local news slant, it will aid in assuring publication.
Finding a Congressional Sponsor
Every politician knows that the key to re-election is constituent service, so a family’s own representative is a good place to start. Of course, it’s opportune if he’s a member of one of the key health committees.
For example, California constituents persuaded Sen. Alan Cranston to introduce a bill in the last Congress, which would establish a federal trauma care clearinghouse and a new grant program for states. The bill got widespread bipartisan support, as well as the support of many outside groups, including the American Medical Association, the American Nurses Association, and the American Public Health Association. But Cranston wasn’t on the Labor and Human Resources Committee, which has jurisdiction over the bill, so he asked its chairman, Sen. Ted Kennedy, to be an original co-sponsor.
Arranging for a bill to be introduced in just one house isn’t enough. Lobbyists must also find a sponsor to introduce a companion bill in the other house.
In the case of the trauma systems campaign, California Rep. Henry Waxman was the logical choice in the House of Representatives, since he chairs the Subcommittee on Health and the Environment. But, a Waxman aide warned that the chairman was very busy and suggested convincing a member of the subcommittee. Advocates found Rep. Jim Bates to be their man. He introduced a bill similar to that sponsored by Cranston in the Senate. (Bates has since been defeated in his bid for re-election.)
Congressional advocates can also help to generate more supportive data. For example, as a member of Congress, Cranston had access to research the private citizen didn’t. Congressional advocates for trauma care services asked the General Accounting Office to look into the state of emergency care. They found that overall funding for emergency medical services had dropped in most states and few areas had developed regional systems of trauma care. Activists armed with this kind of information have ammunition that legislators understand.
Earmarking the Money
Frequently legislators are sympathetic to the cause, but can’t find funding sources other than tax dollars. There are other ways, however, to generate funds than through the taxpayer’s pocket. “For example, create a trust fund where rehab money would come from DWl convictions,” suggests lobbyist Inta Hall, who is trying to get the Massachusetts lawmakers to agree to such an idea. The fund would have a dual purpose, she explains. Discouraging people from driving while intoxicated will also help to prevent some of the many brain injuries resulting from automobile accidents.
In Virginia, Del. Alan Mayer was able to get funding for a pilot case management program through the budget amendment process. The money came from general state funds, although he credits his success, in part, to “plugging in with the right committee chairman.”
“It was on the tenth hole when I talked him into funding this program,” says Mayer, who argued his interest while riding with the chairman in the same golf cart. As is often the case, Mayer says, they were “dealing with conflicting priorities,” but Mayer was able to show that funding the brain injury case management program was more cost-effective.
Reaching the Vote
After the family activist has networked, contacted legislators, and made some progress enlisting congressional support, the work still isn’t over. Throughout the legislative process, the issue has to be monitored all the way from the House and Senate to the President’s desk.
“And don’t forget it’s important to be seen when important votes are going on,” stresses Hall. “Get the legislator’s confidence so if he walks by and asks, ‘What is the vote?’ ” the advocate can tell him. Legislators vote on so many different amendments and bills that they are sometimes unprepared. The advocate can tell him with confidence: “Make sure you vote yes.” If a relationship has been nurtured, the legislator will trust his advice.
Enduring the Campaign
Supporters must be prepared to compromise. It’s rare that you’ll get everything you want in a piece of legislation, says lobbyist Alice Demichelis. “Make the best deal possible,” she advises.
Advocates must realize that although they may follow all “the rules,” they may still find that their legislation is not going to pass on the first try-or the second or the third. The process is a long and tedious one; it’s not unusual for it to take many years before a piece of legislation is made law. Advocate families must keep a long-range perspective.
With diligence, the legislation will be enacted. And through their efforts, the hurt will heal.
-KAREN FELD