Circa 2004
Senator Tom Harkin
Senator Tom Harkin is no stranger to Capitol Hill. First elected to Congress in 1974, he served 10 years before his election to the Senate, where he is now serving his third term. An author of the 1990 Americans with Disabilities Act (ADA), Harkin has a long-standing history of commitment to people with disabilities. This last session found Harkin lending his time, energy and advocacy to issues ranging from the Medicaid Community Attendant Services Act (MiCASSA) and Money Follows the Person Act to legislation affecting accessibility on an international level.
A central figure in the creation of the ADA, Harkin is understandably protective of its preservation, and he supports a future ADA restoration act. “There are a number of Supreme Court decisions that have really chipped away the fundamental ADA Law,” notes Harkin. “The Supreme Court has declared that if you have epilepsy that is controlled by medication, for example, the law will not protect you from discrimination based on your disability. On the other hand, you may be dismissed from your job because your epilepsy is considered a disability. It really is a Catch-22.” Harkin is not alone in his concerns; Democrats and Republicans alike recognize the need for an act to restore the rights originally invoked by Congress under the ADA.
While an ADA restoration act is still in the conceptualization phase, two bills Harkin is currently passionate about passing are MiCASSA and the Money Follows the Person Act. MiCASSA would require states to provide Medicaid coverage not only for nursing home care, but also for personal attendant services in home-based or communitybased environments. “The opposition we’re getting to MiCASSA is simply the cost of implementation. If you look at it in a 10-year budget cycle, the cost will not be much more than what it would be to keep people institutionalized,” Harkin says. Understandably, he is frustrated by a lack of support from both the Bush administration and the Office of Management and Budget. “I’m going to keep on it and I’m going to keep pushing until we get MiCASSA passed,” Harkin adds, although he acknowledges that in the current budgetary climate, chances are not realistic until next year.
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Initially, to implement MiCASSA, states will have to train personnel and make changes in their administrative and service systems.. The Money Follows the Person Act sets up time-limited federal funding to help states with the transition, helping states get a jump-start on the accommodations needed to implement MiCASSA by providing upfront money ($350 million for the first five years, totaling $1.75 billion).
MiCASSA and the Money Follows the Person Act have received opposition from nursing homes concerned about their potential loss of clients and revenue. “I understand their concern, but times change, conditions change, our society changes, we are changing, and we are not going to warehouse people anymore. We’re just not,” says Harkin. He adds, “There is nothing in MiCASSA that dictates a person can’t choose to go to a nursing home. Sometimes people feel that institutional care is their best situation.”
Proponents of MiCASSA point to the desperate need for a less wasteful and more humane avenue for obtaining personal attendant services as an alternative to nursing home care. Many people with health problems who have relied on the assistance of caretakers are faced with a dilemma when their caretakers become elderly or ill, or acquire disabilities of their own. When this happens, they are often forced to move into nursing homes, even though they do not need 24-hour care, but rather simple assistance getting out of bed, managing medications or grocery shopping. For this group, it is more cost-effective to provide personal care assistance in community settings, for only the hours needed. The states of Oregon and Kansas have implemented community care similar to what is proposed for MiCASSA and have good data about its feasibility. At first there is some increase in the number of people using services, but this rise is offset down the road by savings on less-costly community-based services and a decrease in the number of people entering institutions. Furthermore, the financial benefits can’t compare with the improved quality of life people have when they are given a choice in the location and manner in which they may live.
“We give subsidies to all kinds of people. Farmers get subsidies and we don’t tell them what to do with the money; we give food stamps to millions of people and we don’t tell them what they have to buy, with a few exceptions. People with disabilities ought to be able to decide what they want to do with their money and their housing rather than having the government tell them what they have to do,” says Harkin.
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Harkin’s strong views don’t come only from years of talking to his constituents or his ability to delineate between what is just and what is unjust. Rather, his personal experiences with disability in his family have made him conscious of the various accommodations that benefit people with disabilities. “First of all, if my brother had been able to be mainstreamed in school rather than going to a school for the deaf he would have had more choices,” Harkin explains. “The school gave three choices to my brother: he could be a baker, a shoe cobbler, or a printer’s apprentice, and that was it. If interpretive services or job training programs had been in place he would have had a much different life. On the other hand, my nephew, Kelly, [acquired a disability] while serving in the United States military. He had a terrible accident that left him with quadriplegia. Because he was in the military, he received good care and rehabilitation, after which he got the GI Bill and went to school. [The military] provided him with a good wheelchair and an accessible van. He now lives by himself and has for some time. He has a nurse who comes in the morning and gets him up and ready for the day. That’s a pretty good deal. But again, it is still cheaper than putting him in an institution or nursing home. He goes to work and he actually pays taxes. I’m just saying that what happens in the military ought to happen for the rest of society.”
Harkin is also addressing disability issues on an international level. As a member of the Appropriations Committee, the committee that funds international operations, Harkin was confronted a few years ago by a representative from Disability Rights Education and Defense Fund, a California-based organization. During a visit to Bosnia, the woman had discovered that a significant portion of the money the United States was allocating to re-build facilities, such as schools, was going to structures that were not accessible. “We had the strange case that in the United States they wouldn’t be allowed to [construct inaccessible buildings], but over there they were doing it with our taxpayers’ dollars,” he explains. Harkin raised the issue with Secretary of State Colin Powell, who agreed to address the problem. A year later, Harkin was still not seeing the results he expected, and he confronted Powell with the transcripts of his initial promises. The next time Powell came to testify, the Secretary was prepared to present the State’s plan. Harkin explains, “I was able to get language in the Foreign Assistance Bill that requires USAID [the agency providing U.S. economic, development, and humanitarian assistance around the world] to develop access standards governing all U.S.-funded construction anywhere in the world. This is not just in Bosnia, but in Afghanistan, in Iraq or anywhere else that we are.”
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Congressman James Langevin
In the recent Supreme Court case Tennessee vs. Lane, five plaintiffs won a 5-4 victory against the state of Tennessee for its violation of Title II of the Americans with Disabilities Act (ADA) in not providing adequate access to court buildings. Congressman James Langevin finds it outrageous that such a case had to go to the Supreme Court to be resolved, and finds the narrow margin of victory troubling. “In my mind, there should not have been any question that the courthouse had to be accessible. An individual was required to go to court and was [penalized for failing to show] because it wasn’t accessible. Public buildings must be accessible to people with disabilities,” Langevin says emphatically. “I find it disappointing that it was a split decision. I’m certainly glad the individuals suing prevailed, but I also find it very concerning and disappointing that it was so close.” Legislators, advocates and people with disabilities are also concerned that the close margin will send a mixed message to the rest of the world about other accessibility rights addressed by the ADA. “If it is not a requirement that public buildings have to be accessible, then there may be a strong belief that businesses don’t have to be accessible with respect to public accommodations to people with disabilities,” says Langevin.
Although Langevin believes “the spirit of the law” has been significantly narrowed in focus, the ADA has brought great progress in leveling the playing field and opening doors for people with disabilities. “I saw the importance of the ADA as more than just a law that brought down physical barriers. The ADA also changed perceptions. No longer were accessible accommodations a courtesy; they were now viewed as a right. People had a right to public accommodations and equal access to public buildings,” says Langevin.
A life in politics and government was not the planned career for Congressman Langevin. While he enjoyed public service, his sights were originally set on law enforcement, and he started exploring the field in his early teens as a cadet working with police officers. When Langevin was 16, an accidental discharge of an officer’s weapon left him with a spinal cord injury, and he recognized that his original career path was no longer a possibility. “I had been around politics and I understood a little about elections,” says Langevin, “but more so, I felt touched by the community as it rallied behind me at a time when I needed it most. It showed me what good people could do by coming together and making a difference, and I wanted to give something back if that was ever possible.”
When Langevin arrived in Congress, there was not a caucus specifically examining the issues surrounding disabilities. It didn’t take long to recognize the need, and shortly thereafter Langevin—together with Major Owens as the Democratic co-chair and Jim Ramstad and former Congresswoman Connie Morella as the Republican chairs—created a Bipartisan Disabilities Caucus, which has now grown to 42 members. Congresswoman Nancy Johnson has joined as the new Republican cochair. The representation of both parties reflects the universal importance of disability issues for all Americans, regardless of party affiliation. The caucus tackles projects such as the Work Incentives Act, the Assistive Technology Act, the Vocational Rehabilitation Programs, the Developmental Disabilities Act and reauthorization of the Individuals with Disabilities Education Act (IDEA). In addition to addressing important legislation, the caucus also helps raise awareness and educate people about issues that affect people with disabilities. For example, it recently hosted a Web Accessibility Day, where members of Congressional staffs could learn the elements needed for an accessible website.
In the same way the Disabilities Caucus is educating congressional staffs, Langevin feels the government should be educating the rest of the country. “While there are a lot of people in the business community who truly want to comply with the ADA, I think there is a lot of confusion about the ADA. Businesses often fear what it means and what they are specifically required to do. I want to see government do a better job educating people about what the ADA is and what it is not, to take away the fear. [Compliance with the ADA] doesn’t necessarily require expending a lot of money. A number of [small changes] can be reasonable accommodations, and in some cases there are tax credits to help pay for complying with the ADA. There certainly needs to be more money for a public education program about the ADA,” says Langevin.
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Langevin feels one flaw of the ADA is that it does not give any particular entity the authority to verify whether a company has met specific accessibility criteria and is in compliance with the ADA. He says one proposed solution has been to have local building inspectors serve as the sign-off entities. When a company is building or trying to retrofit, the inspectors would have the authority to come in and sign-off that the business has complied with the letter and spirit of the ADA. “I understand from a businesses point of view that it’s a frustration if they have made a good-faith attempt and think that they have done everything right, and then a lawsuit is filed because something is an inch off or not exactly perfect. We need to find a happy medium, because I think the overwhelming majority of businesses do want to be good neighbors, want to comply and want to be responsible,” says Langevin.
Accessibility has also been a contentious issue for voting, especially since the controversial 2000 presidential elections. In his former position as Secretary of State of Rhode Island, Langevin implemented an overhaul of the State’s entire election system. The outdated lever voting machines were discarded in favor of new Optical Scan equipment that is generally accessible to people with all types of disabilities. A few years later, he found himself in Congress dealing with voter technology at a national level. “I was able to be instrumental in helping guide Congress through this process of acquiring new voting equipment,” Langevin says.
In addition to the Optical Scan system, another option for accessible voting is the Direct Recording Electronic (DRE) equipment. Both technologies can be used by people with all types of disabilities, but each has unique merits. “One of the advantages of Optical Scan over the DRE equipment is that you have the ballot itself as the ultimate audit trail. DRE is the new stuff, sexier, more modern, but the lack of an automatic paper trail or verification system (such as what the Optical Scan system could offer) is considered a drawback. However, it is still better than the older systems that are out there,” explains Langevin. One purported advantage of the DRE equipment is that if a polling place can’t be made accessible, the DRE equipment can be transported to another location, still allowing the person the opportunity to cast a private ballot. Langevin is wary of this “advantage,” however. “I would prefer that every place be made accessible. That has to be the primary goal,”he cautions. [For a more detailed discussion of accessible voting, see the Laura Bush issue of ABILITY Magazine.]
Another passionate issue for Langevin is the growing crisis in funding health care in the U.S. There are more than 40 million Americans who lack health insurance. In my opinion this is the number one public policy issue that we need to address, and yet the legislative process doesn’t seem to be moving fast enough to solve the crisis,” he warns.
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Since there has been no clear consensus how to solve the national health care problem, Langevin is preparing to introduce his own health care bill, featuring a time-tested approach. The Federal Employees Health Benefits Program already provides health insurance for more than 8 million federal employees, their dependents and retirees. In essence, the federal government negotiates on a national level with several different health plans on behalf of federal employees. Employees then have a wide range of options—everything from the basic plan with small co-payments through the classic Cadillac version, with larger co-payments but increased choices and coverage. Langevin’s plan calls for expanding the risk pool of the Federal Employees Health Benefits Program to include all Americans, either through the income tax or payroll tax systems. “I think the citizens of this country who support and pay for the government through their tax dollars deserve the same kind of health care coverage as federal employees and members of Congress,” Langevin says. He expects opposition primarily from the insurance industry. “They would probably make less of a profit, but it would control costs and bring more stability to the market in terms of insuring reimbursements.”
When asked to reflect on his experience in politics thus far, Langevin responds, “It’s a wonderful way to make a difference.” However, despite his accomplishments, he’s not immune to frustration. “It gets frustrating when the process moves so slowly in addressing important issues.”
Congressman Langevin www.house.gov/langevin
by Romney Snyder
