Medicare Improvements for Special Needs Beneficiaries Act of 2003

I am pleased to join my colleague from Washington, Senator Patty Murray, as well as my colleague and co-chair of the Senate Diabetes Caucus, Senator John Breaux, in introducing the Pancreatic Islet Cell Transplantation Act of 2003, which will help to advance tremendously important research that holds the promise of a cure for the more than 1 million Americans with type 1 or juvenile diabetes.

As the founder and co-chair of the senate Diabetes Caucus, I have learned a great deal about this serious disease and the difficulties and heartbreak that it causes for so many Americans and their families as they await a cure. Diabetes is a devastating, life-long condition that affects people of every age, race, and nationality. It is the leading cause of kidney failure, blindness in adults, and amputations not related to injury. Moreover, a new study released by the American Diabetes Association last week estimates that diabetes cost the Nation $132 billion last year, and that health care spending for people with diabetes is almost double what it would be if they did not have diabetes.

The burden of diabetes is particularly heavy for children and young adults with type 1, or juvenile diabetes. Juvenile diabetes is the second most common chronic disease affecting children. Moreover, it is one that they never outgrow.

In individuals with juvenile diabetes, the body's immune system attacks the pancreas and destroys the islet cells that produce insulin. While the discovery of insulin was a landmark breakthrough in the treatment of people with diabetes, it is not a cure, and people with juvenile diabetes face the constant threat of developing devastating, life-threatening complications as well as a drastic reduction in their quality of life.

Thankfully, there is good news for people with diabetes. We have seen some tremendous breakthroughs in diabetes research in recent years, and I am convinced that diabetes is a disease that can be cured, and will be cured in the near future.

We were all encouraged by the development of the Edmonton Protocol, an experimental treatment developed at the University of Alberta involving the transplantation of insulin-producing pancreatic islet cells, which has been hailed as the most important advance in diabetes research since the discovery of insulin in 1921. Of the approximately 200 patients who have been treated using variations of the Edmonton Protocol, all have seen a reversal of their life-disabling hypoglycemia, and nearly 80 percent have maintained normal glucose levels without insulin shots for more than 1 year.

Moreover, the side effects associated with this treatment-- which uses more islet cells and a less toxic combination of immunosuppressive drugs than previous, less successful protocols--have been mild and the therapy has been generally well tolerated by most patients.

Unfortunately, long-term use of toxic immunosuppressive drugs, has side effects that make the current treatment inappropriate for use in children. Researcher, however, are working hard to find a way to reduce the transplant recipient's dependence on these drugs so that the procedure will be appropriate for children in the future, and the protocol has been hailed around the world as a remarkable breakthrough and proof that islet transplantation can work. It appears to offer the most immediate chance to achieve a cure for type 1 diabetes, and the research is moving forward rapidly.

New sources of islet cells must be found, however, because, as the science advances and continues to demonstrate promise, the number of islet cell transplants that can be performed will be limited by a serious shortage of pancreases available for islet cell transplantation. There currently are only 2,000 pancreases donated annually, and, of these, only about 500 are available each year for islet cell transplants. Moreover, most patients require islet cells from two pancreases for the procedure to work effectively.

The legislation we are introducing today will increase the supply of pancreases available for these trials and research. Our legislation will direct the Centers for Medicare and Medicaid Services to grant credit to organ procurement organizations OPOs--for the purposes of their certification--for pancreases harvested and used for islet cell transplantation and research.

Currently, CMS collects performance data from each OPO based upon the number of organs procured for transplant relative to the population of the OPO's service area. While CMS considers a pancreas to have been procured for transplantation if it is used for a whole organ transplant, the OPO receives no credit towards its certification if the pancreas is procured and used for islet cell transplantation or research. Our legislation will therefore give the OPOs an incentive to step up their efforts to increase the supply of pancreases donated for this purpose.

In addition, the legislation establishes an inter-agency committee on islet cell transplantation comprised of representatives of all of the Federal agencies with an active role in supporting this research. The many advisory committees on organ transplantation that currently exist are so broad in scope that the issue of islet cell transplantation-- while of great importance to the juvenile diabetes community--does not rise to the level of consideration when included with broader issues associated with organ donation, such as organ allocation policy and financial barriers to transplantation. We believe that a more focused effort in the area of islet cell transplantation is clearly warrented since the research is moving forward at such a rapid pace and with such remarkable results.

To help us collect the data necessary to move islet cell transplantation from an experimental procedure to a standard therapy covered by insurance, our legislation directs the Institute of Medicine to conduct a study on the impact of islet cell transplantation on the health-related quality of life outcomes for individuals with juvenile diabetes, as well as the cost-effectiveness of the treatment.

Diabetes is the most common cause of kidney failure, accounting for 40 percent of new cases, and a significant percentage of individuals with type 1 diabetes will experience kidney failure and become Medicare-eligible before they are age 65. Medicare currently covers both kidney transplants and simultaneous pancreas-kidney transplants for these individuals. To help Medicare decide whether it should cover pancreatic islet cell transplants, our legislation authorizes a demonstration project to test the efficacy of simultaneous islet-kidney transplants

and islet transplants following a kidney transplant for individuals with type 1 diabetes who are eligible for Medicare because they have end stage renal disease ESRD.

Islet cell transplantation offers real hope for people with diabetes. Our legislation, which is strongly supported by the Juvenile Diabetes Research Foundation JDRF, addresses some of the specific obstacles to moving this research forward as rapidly as possible, and I urge all of my colleagues to join us as cosponsors.

Mr. President, from Pickerel Pond to Lake Auburn, from Sebago Lake to Bryant Pond, lakes and ponds in Maine are under attack. Aquatic invasive species threaten Maine's drinking water system, recreation, wildlife habitat, lakefront real estate, and fisheries. Plants, such as variable leaf milfoil, are crowding out native species. Invasive Asian shore crabs are taking over southern New England's tidal pools, and just last year began their advance into Maine--to the potential detriment of Maine's lobster and clam industries.

Maine and many other States are attempting to fight back against these invasions. Unfortunately, their efforts have frequently been of limited success. As with national security, protecting the integrity of our lakes, streams, and coastlines from invading species cannot be accomplished by individual States alone. We need a uniform, nationwide approach to deal effectively with invasive species.

Today I am pleased to join Senator Levin in introducing the National Aquatic Invasive Species Act of 2003. This bill would create the most comprehensive nationwide approach to date for combating alien species that invade our shores.

The stakes are high when invasive species are unintentionally introduced into our Nation's waters. They endanger ecosystems, reduce biodiversity, and threaten native species. They disrupt people's lives and livelihoods by lowering property values, impairing commercial fishing and aquaculture, degrading recreational experiences, and damaging public water supplies.

In the 1950s, European green crabs swarmed the Maine coast and literally ate the bottom out of Maine's soft-shell clam industry by the 1980s. Many clam diggers were forced to go after other fisheries or find new vocations. In just one decade, this invader reduced the number of clam diggers in Maine from nearly 5,000 in the 1940s to fewer than 1500 in the 1950s. European green crabs currently cost an estimated $44 million a year in damage and control efforts in the United States.

Past invasions forewarn of the long-term consequences to our environment and communities unless we take steps to prevent new invasions. It is too late

to stop European green crabs from taking hold on the east coast, but we still have the opportunity to prevent many other species from taking hold in Maine and the United States.

Three months ago, in the town of Limerick, ME, one of North America's most aggressive invasive species--hydrilla--was found in Pickeral Pond. Hydrilla can quickly dominate its new ecosystem--already hydrilla covers 60 percent of the bottom of Pickerel Pond from the shoreline out to 6 feet deep. Never before detected in Maine, this stubborn and fast- growing aquatic plant threatens Pickerel Pond's recreational use for swimmers and boaters, and could spread to nearby lakes and ponds. Unfortunately, eradication of hydrilla is nearly impossible, so we must now work to prevent further infestation in the State.

The National Aquatic Invasive Species Act of 2003 is the most comprehensive effort ever to address the threat of invasive species. By authorizing $836 million over 6 years, this legislation would open numerous new fronts in our war against invasive species. The bill directs the Coast Guard to develop regulations that will end the easy cruise of invasive species into U.S. waters through the ballast water of international ships, and would provide the Coast Guard with $6 million per year to develop and implement these regulations.

The bill also would provide $30 million per year for a grant program to assist State efforts to prevent the spread of invasive species. It would provide $12 million per year for the Army Corps of Engineers and Fish and Wildlife Service to contain and control invasive species. Finally, the Levin-Collins bill would authorize $30 million annually for research, education, and outreach.

The most effective means of stopping invading species is to attack them before they attack us. We need an early alert, rapid response system to combat invading species before they have a chance to take hold. For the first time, this bill would establish a national monitoring network to detect newly introduced species, while providing $25 million to the Secretary of the Interior to create a rapid response fund to help States and regions respond quickly once invasive species have been detected. This bill is our best effort at preventing the next wave of invasive species from taking hold and decimating industries and destroying waterways in Maine and throughout the country.

One of the leading pathways for the introduction of aquatic organisms to U.S. waters from abroad is through transoceanic vessels. Commercial vessels fill and release ballast tanks with seawater as a means of stabilization. The ballast water contains live organisms from plankton to adult fish that are transported and released through this pathway. The bill we are introducing today would establish a framework to prevent the introduction of aquatic invasive species by ships.

Currently, the U.S. is in negotiations with the international community on the development and implementation of an international program for preventing the unintentional introduction and spread of non-indigenous species through ballast water. I commend American negotiators for working with the international community to address this global problem. This legislation offers a strong framework that the U.S. should use as a model in negotiating this important international convention. The U.S. Government must ensure that the international convention will be at least as protective as the legislation we are introducing today. The United States must take the most protective action possible to protect our waters, ecosystems, and industries from destructive invasive species before it is too late.

Mr. President, today, my colleague from Maine, Senator Collins and I are very pleased to introduce the National Aquatic Invasive Species Act of 2003. This bill, which reauthorizes the Nonindigenous Aquatic Nuisance Prevention and Control Act, takes a comprehensive approach towards addressing aquatic nuisance species to protect the Nation's waters. This bill deals with the prevention of new introductions, the screening of new aquatic organisms coming into the country, the rapid response to new invasions, and the research to implement the provisions of this bill.

The problem of invasive species is a very real one. Over the past 450 years, during colonization and development of this country, more than 6,500 nonindigenous invasive species have been introduced into the United States and have become established, self-sustaining populations. These species--from microorganisms to mollusks, from pathogens to plants, from insects to fish to animals--typically encounter few, if any, natural enemies in their new environments and wreak havoc on native species. Aquatic nuisance species threaten biodiversity nationwide, especially in the Great Lakes.

Some of my colleagues may remember that back in the late eighties, the problem of aquatic nuisance species was first raised after the zebra mussel was released into the Great Lakes. The Great Lakes still have zebra mussels, and now, 20 States are fighting to control them. Zebra mussels were carried over from the Mediterranean to the Great Lakes in the ballast tanks of ships. The leading pathway for aquatic invasive species is maritime commerce. Most invasive species are contained in the water that ships use for ballast. Aquatic invaders such as the zebra mussel and round goby were introduced into the Great Lakes when ships, often from halfway around the world, pulled into port and discharged their ballast water. Aquatic invaders can also attach themselves to ships' hulls and anchor chains.

Because of the impact that the zebra mussel had in the Great Lakes, Congress passed legislation in 1990 and 1996 that have reduced, but not eliminated, the threat of new invasions by requiring ballast water management for ships entering the Great Lakes. Today, there is a mandatory ballast water management program in the Great Lakes. The current law requires that ships entering the Great Lakes must exchange their ballast water, seal their ballast tanks or use alternative treatment that is ``as effective as ballast water exchange.'' Unfortunately, the effectiveness of ballast water exchange has been left undefined. Consequently, alternative treatments have not been fully developed and widely tested on ships because the developers of ballast technology do not know what standard

they are trying to achieve. This obstacle is serious because ultimately, only onboard ballast water treatment will adequately reduce the threat of new aquatic nuisance species being introduced through ballast water.

Our bill rectifies this problem. First, this bill establishes deadlines for national interim and final standards for ballast water management. This way, technology vendors and the maritime industry know when to expect clear requirements. Second, our bill establishes what the phrase ``as effective as ballast water exchange'' means for the purposes of the interim period. Research has shown that ballast water exchange has highly variable effectiveness rates. This bill takes the maximum effectiveness that ballast water exchange could have using the safest approach--a 95-percent reduction of near coastal plankton and establishes it as the floor for treatment effectiveness which is a 95 percent kill or removal of live organisms. Within 18 months of the bill's passage, the Coast Guard is required to issue regulations implementing an interim ballast water standard that would require ships that enter any U.S. port after operating outside the Exclusive Economic Zone of 200 miles to either use ballast water treatment technology that meets the standard, retain the ship's ballast water, or exchange the ship's ballast water in the high seas. Ships operating in coastal waters would not be required to manage ballast water during the interim standard.

A 95-percent reduction of organisms will be the interim standard used for treatment technology until the EPA, with the concurrence of the Coast Guard, promulgates the final standard. This interim standard is not intended to be implemented for the long run, and it is not perfect. However, a final standard is difficult to set today or in the near future because of the limited research that has been conducted on how clean or sterile ballast water discharge should be, what is the best expression of a standard, and what is technologically achievable. Rather than wait many more years before taking action to stop new introductions, I believe that an imperfect but clear and achievable interim standard for treatment technology is the right approach. This interim standard will lead to the use of ballast treatments that are more protective of our waters than the default method of ballast water exchange provides, and it can be implemented in the very near future. Further, the bill provides the Coast Guard with the flexibility to promulgate the interim standard using a size-based standard or by whatever parameters the Coast Guard determines appropriate.

I understand that ballast water technologies are being researched and are ready to be tested onboard ships. These technologies include ultraviolet lights, filters, chemicals, deoxygenation, and several others. Each of these technologies has a different pricetag attached to it. It is not my intention to overburden the maritime industry with an expensive requirement to install technology. In fact, the legislation states that the final ballast water technology standard must be based on ``best available technology economically achievable.'' That means that the EPA must consider what technology is available, and if there is not economically achievable technology available to a class of vessels, then the standard will not require ballast technology for that class of vessels, subject to review every 3 years. I do not believe this will be the case, however, because the approach creates a clear incentive for treatment vendors to develop affordable equipment for the market. Since ballast technology will be always evolving, it is important that the EPA review and revise the standard so that it reflects what is the best technology currently available and whether it is economically achievable. Shipowners cannot be expected to upgrade their equipment upon every few years as technology develops, however, so the law provides an approval period of at least 10 years.

There are other important provisions of the bill as well. The bill requires the Army Corps of Engineers to construct and operate the Chicago Ship and Sanitary Canal project which includes the construction of a second dispersal barrier to keep species like the Asian carp from migrating up the Mississippi through the canal into the Great Lakes. Equally important, this barrier will prevent the migration of invasive species in the Great Lakes from proceeding into the Mississippi system. The bill establishes an experimental ballast treatment approval process to take effect immediately so that the treatment technology industry can begin full-scale experimental installations of treatments on ships. The bill authorizes additional funding for better coordinated research to find effective means of combating invasive species. It would help Federal, State, and regional authorities guard against future invasions by developing early detection monitoring and rapid response plans. And it provides funding for outreach and education programs to inform the public and marina owners about the dangers of inadvertently carrying aquatic invaders on the hulls of recreational boats or dumping bait buckets into the Lakes.

Invasive species threaten the region's biological diversity and are an economic drain. Estimates of the annual economic damage caused nationwide by invasive species go as high as $137 billion. Because of the system of canals connecting the Great Lakes to the Mississippi River and the Atlantic Ocean, there are no physical barriers to block the spread of invasive species, making the Great Lakes highly vulnerable. Because of the frequency of ships entering into the Great Lakes, though, our region is often ``ground zero,'' and once an exotic species establishes itself, it is almost impossible to eradicate and sometimes difficult to prevent from moving throughout the nation. Therefore, prevention is the key to controlling new introductions.

All in all, the bill would cost between $160 million and $170 million each year. This is a lot of money, but it is a critical investment. As those of us from the Great Lakes know, the economic damage that invasive species can cause is much greater. However, compared to the $137 billion annual cost of invasive species, the cost of this bill is minimal. Therefore, I urge my colleagues to cosponsor this legislation and work to move the bill swiftly through the Senate.

Mr. President, I rise today in support of the National Aquatic Invasive Species Act and the National Invasive Species Council Act. As a Senator representing a Great Lake State, I am proud to be an original cosponsor of both of these bills that are critical to the future of the Great Lakes ecosystem.

In my 36 years of public service, one of my greatest sources of comfort and accomplishment has been my work to help clean up and protect the environment, particularly Lake Erie.

Lake Erie's ecology has come a long way since I was elected to the state legislature in 1966. During that time, Lake Erie formed the northern border of my district and it was known worldwide as a dying lake, suffering from eutrophication. Lake Erie's decline was covered extensively by the media and became an international symbol of pollution and environmental degradation. I remember the British Broadcasting Company even sending a film crew to make a documentary about it. One reason for all the attention is that Lake Erie is a source of drinking water for 11 million people.

Seeing firsthand the effects of pollution on Lake Erie and the surrounding region, I knew we had to do more to protect the environment for our children and grandchildren. As a State legislator, I made a commitment to stop the deterioration of the lake and to wage the ``Second Battle of Lake Erie'' to reclaim and restore Ohio's Great Lake. I have continued this fight throughout my career as County Commissioner, state legislator, Mayor of Cleveland, Governor of Ohio, and United States Senator.

It is comforting to me that 36 years since I started my career in public service, I am still involved, as a member of the United States Senate and our Committee on Environment and Public Works, in the battle to save Lake Erie.

Today in Ohio, we celebrate Lake Erie's improved water quality. It is a habitat to countless species of wildlife, a vital resource to the area's tourism, transportation, and recreation industries, and the main source of drinking water for many Ohioans. Unfortunately, however, there is still a great deal that needs to be done to improve and protect Ohio's greatest natural asset.

Our current enemy is the aquatic invasive species that threaten the health and viability of the Great Lakes fishery and ecosystem. I am worried about these aquatic terrorists in the ballast water that enter the Great Lakes system through boats from all over the world. These species are already wreaking havoc in the lakes and will continue to do so until they are stopped.

Since the 1800s, over 145 invasive species have colonized in the Great Lakes. Since 1990, when legislation to address aquatic nuisance species was first enacted, we have averaged about one new invader each year. Clearly, we have not closed the door to invasive species. I am deeply troubled by the surge in new invasive species in Lake Erie, because once a species establishes itself, there is virtually no way to eliminate it.

As Mayor of Cleveland in the 1980s, I was alarmed about the introduction of zebra mussels into the Great Lakes and conducted the first national meeting to investigate the problem. It is a complicated situation and we are still learning how invasive species like the zebra mussel affect the ecosystem.

In early August, for example, I conducted a field hearing of the Environment and Public Works Committee to examine the increasingly extensive oxygen depletion or anoxia in the central basin of Lake Erie. This phenomenon has been referred to as a ``dead zone.'' Anoxia over the long term could result in massive fish kills, toxic algae blooms, and bad-tasting or bad-smelling water.

Anoxia is usually the result of decaying algae blooms which consume oxygen at the bottom of the lake. In the past, excessive phosphorus loading from point sources such as municipal sewage treatment plants were greatly responsible for algae blooms. Since 1965, the level of phosphorus entering the Lake has been reduced by about 50 percent. These reductions have resulted in smaller quantities of algae and more oxygen into the system.

In recent years, overall phosphorus levels in the Lake have been increasing, but the amount of phosphorus entering it has not. Scientists are unable to account for the increased levels of phosphorus in the Lake. One hypothesis is the influence of two aquatic nuisance species the zebra and quagga mussels. Although their influence is not well understood, they may be altering the way phosphorus cycles through the system.

Another way zebra mussels could be responsible for oxygen depletion in Lake Erie is due to their ability to filter and clear vast quantities of lake water. Clearer water allows light to penetrate deeper into the Lake, encouraging additional organic growth on the bottom. When this organic material decays, it consumes oxygen.

The possible link between Lake Erie's ``dead zone'' problem and aquatic nuisance species like the zebra mussel should underscore the importance of our legislation, the National Aquatic Nuisance Species Act. Over the last 30 years, we have made remarkable progress in improving water quality and restoring the natural resources of our Nation's aquatic areas, and we need to prevent any backsliding on this progress.

While aquatic invasive species are a particular problem because they readily spread through interconnected waterways and are difficult to treat safely, they represent only one piece of the problem. Both terrestrial and aquatic invasive species cause significant economic and ecological damage throughout North America. Recent estimates state that invasive species cost the U.S. at least $138 billion per year and that 42 percent of the species on the Threatened and Endangered Lists are at risk primarily due to invasive species.

In 1999, President Clinton issued an Executive Order creating the National Invasive Species Council to develop a national management plan for invasive species and bring together the federal agencies responsible for managing them. This was a promising action that has never been fully implemented. The National Invasive Species Management Plan was issued in 2001, but agencies with responsibilities under the plan have been slow to complete activities by the established due dates and the agencies do not always act in a coordinated manner.

The General Accounting Office released a report in October 2002 that claimed that implementing the Management Plan was being hampered by the lack of a congressional mandate for the Council. It is disturbing to me that this Council exists but is not making substantial progress. Make no mistake about it; these species are not waiting for the Federal Government to get all of its ducks in a row. They are continuing to take over the waters and lands of the U.S.

The National Invasive Species Council Act will fix this problem by legislatively establishing the Council. Because timing is so important, I urge my colleagues to act quickly on both of these bills to ensure that the National Invasive Species Management Plan is updated and fully implemented.

We must act quickly to strengthen the oversight of efforts preventing invasive species from wreaking havoc on the Great Lakes' aquatic habitat and throughout the U.S.

I look forward to working with my colleagues in the House and Senate to move these bills forward. I understand that both bills will be referred to the Environment and Public Works Committee today, and I look forward to working with Chairman Inhofe to move them expeditiously through committee.

Mr. President, I am proud to introduce the Lifespan Respite Care Act of 2003 today, a bill to establish the availability of respite services for our family caregivers, and to increase coordination of these programs so that caregivers will be better able to access them.

As a nation, we rely on family caregivers. Twenty-six million Americans care for an adult family member who is ill or disabled, Eighteen million children have a condition that place significant demands on their parental caregivers. Four million Americans with mental retardation or a developmental disability rely on family members for care and supervision. If services provided by family caregivers were replaced by paid services, it would cost nearly $200 billion annually.

But these are just numbers. Every member has a human face. Let me tell you about Heather Thoms-Chelsey. I met Heather last year at a press conference announcing the Lifespan Respite Care Act of 2002. At that press conference I also met Heather's then 4-year-old daughter, Victoria, who as Rett syndrome. Victoria is totally dependent on family caregivers for all basic living skills: dressing, feeding, bathing and toileting. She also engages in self-injurious behaviors, hand-biting, head banging, body slamming, hair pulling. She has to be monitored all the time for her protection. Heather says, ``I feel tired and exhausted after only less than 5 years, what will I be like in 15? Or even 20?''

Heather is very resourceful. She has managed to find some respite care--164 hours per year--through her State's department of hygiene and mental health. She used 4 hours of her allotted time to bring a respite care worker with her to the press conference so she could tell us her story. The State allows Heather a maximum payment of $7.50 per hour for respite services. It is difficult to find someone who can care for a child with such complicated needs for that. Most of the time, Heather uses the respite care dollars to hire someone to help her care for Victoria in the home or on an outing. Very rarely does Heather actually get to leave the house and take a real break. Some would say Heather is one of the lucky ones. She actually has some respite care. Many people have none.

Heather's story is repeated all across this country. Some people are caring for children or grandchildren with special needs and elderly parents at the same time. Some have called these people the ``sandwich'' generation, sandwiched between the caregiving demands of children or grandchildren and the caregiving demands of elderly parents.

Just because family caregiving is unpaid does not mean it is costless. Caregiving is certainly personally rewarding but it can also result in substantial emotional and physical strain and financial hardship. Many caregivers are exhausted and become sick themselves. Many give up jobs to care for loved ones, putting their own financial security in jeopardy.

I believe that our country is suffering not just from a budget deficit, but what Mona Harrington has called, ``a care deficit.'' Everywhere we look--nursing, childcare, teaching, long-term care--we see shortages and looming crises that threaten the provision of care on which our children, our parents, and our families all depend. Caregiving is undervalued, underfinanced, and too often uncompensated. Family caregiving seems almost ``invisible'' in our society, perhaps because it is work that women perform in the home.

It is time we recognize the heroic effort of our family caregivers and provide them the kind of support they need before their own health deteriorates. One way to do that is through respite care. Respite care provides a much needed break from the daily demands of caregiving for a few hours or a few days. These welcome breaks help protect the physical and mental health of the family caregiver, making it possible for the individual in need of care to remain in the home.

Unfortunately, respite care is hard to find. Many caregivers do not know how to find information about services available. Even when community respite care services exist, there are often long waiting lists. For example, the United Cerebral Palsy Association of Nassau County on Long Island, provides respite service to 70 people but they have had a 200-person waiting list since 1995. In the same community, the Association for the Help of Retarded Children serves 140 youngsters; 200 children are on their waiting list. Variety Preschoolers serves 150 toddlers with special needs; 120 children are on their waiting list. The list goes on and on.

But, this is not a problem isolated to Long Island, NY. It is happening all across the America. There are more caregivers in need of respite care than there are respite care resources available. Part of the problem is funding and part of the problem is staffing.

Children and adults with special needs require trained caregivers. Parents and spouses and other family caregivers are understandably hesitant to leave their loved ones with untrained staff. But training staff costs money and trained staff are going to be reluctant to work for as little as $7-8 an hour. Until we recognize the value of caregiving and pay for it as a valued service, we are going to continue to face shortages: shortages in respite care but also shortage in caregiving in a larger sense.

We don't have enough teachers. We don't have enough nurses. We don't have enough childcare workers. We don't have enough trained workers to care for our elderly. And we don't have enough trained staff to provide respite care.

It is time that we, as a nation, face this care deficit and do something about it.

Today, I, along with my colleagues, Senators Warner, Mikulski, Snowe, Breaux, Jeffords, Murray, Collins, Kennedy, and Smith, are introducing the Lifespan Respite Care Act of 2003. This bill would provide over $90 million in grants annually to develop a coordinated system of respite care services for family caregivers of individuals with special needs regardless of age. Funds could also be used to increase respite care services or to train respite care workers or volunteers.

Some of my colleagues have questioned the pricetag of this legislation. I ask them to do the math. With 26 million caregivers of adults and 18 million caregivers of children with special needs, $90 million dollars amounts to $2.05 per caregiver. If anything, we should be investing more in respite care, not less. Estimates place the cost of current family caregiving at $200 billion annually. We simply cannot afford to continue to ignore this issue.

I remain committed to the concerns of family caregivers and to their need for respite care in particular. Together, I believe we can pass respite care legislation.

But, our work cannot stop there. The need of family caregivers for respite care is just one important piece of a larger complex picture. I am asking you to join me in a longer term effort to put the care deficit--in childcare, in teaching, in nursing, in long-term care, as well as in family caregiving--on the national agenda.

Mr. President, I rise today to introduce the Indian School Bus Route Safety Reauthorization Act of 2003. This bill continues an important Federal program begun in TEA-21 that addresses a unique problem with the roads in and around the Nation's single largest Indian reservation and the neighboring counties. Through this program, Navajo children who had been prevented from getting to school by frequently impassable roads are now traveling safely to and from their schools. Because of the unusual nature of this situation, I believe it must continue to be addressed at the Federal level.

I would like to begin with some statistics on this unique problem and why I believe a Federal solution continues to be necessary. The Navajo Nation is by far the Nation's largest Indian reservation, covering 25,000 square miles. Portions of the Navajo Nation are in three States: Arizona, New Mexico, and Utah. No other reservation comes anywhere close to the size of Navajo. To give you an idea of its size, the State of West Virginia is about 24,000 square miles. In fact, 10 States are smaller in size than the Navajo reservation.

According to the Bureau of Indian Affairs, about 9,800 miles of public roads serve the Navajo Nation. Only about one-fifth of these roads are paved. The remaining 7,600 miles, 78 percent, are dirt roads. Every day schoolbuses use nearly all of these roads to transport Navajo children to and from school.

About 6,400 miles of the roads on the Navajo reservation are BIA roads, and about 2,500 miles are State and county roads. All public roads within, adjacent to, or leading to the reservation, including BIA, State, and county roads are considered part of the Federal Indian reservation road system. However, only BIA roads are eligible for Federal maintenance funding from BIA. Moreover, construction funding and improvement funding from the Federal Lands Highways Program in TEA- 21 is generally applied only to BIA or tribal roads. Thus, the States and counties are responsible for maintenance and improvement of their 2,500 miles of roads that serve the reservation.

The counties in the three States that include the Navajo reservation are simply not in a position to maintain all of the roads on the reservation that carry children to and from school. Nearly all of the land area in these counties is under Federal or tribal jurisdiction.

For example, in my State of New Mexico, three-quarters of McKinley County is either tribal or Federal land, including BLM, Forest Service, and military land. The Indian land area alone comprises 61 percent of McKinley County. Consequently, the county can draw upon only a very limited tax base as a source of revenue for maintenance purposes. Of the nearly 600 miles of county-maintained roads in McKinley County, 512 miles serve Indian land.

In San Juan County, UT, the Navajo Nation comprises 40 percent of the land area. The county maintains 611 miles of roads on the Navajo Nation. Of these, 357 miles are dirt, 164 miles are gravel, and only 90 miles are paved. On the reservation, the county has three high schools, two elementary schools, two BIA boarding schools and four preschools.

The situation is similar in neighboring San Juan County, NM, as well, Apache, Navajo, and Coconino Counties, AZ. In light of the counties' limited resources, I do believe the Federal

Government is asking the States and counties to bear too large a burden for road maintenance in this unique situation.

Families living in and around the reservation are no different from families anywhere else; their children are entitled to the same opportunity to get to school safely and to get a good education. However, the many miles of unpaved and deficient roads on the reservation are frequently impassable, especially when they are wet, muddy, or snowy. If the schoolbuses don't get through, the kids simply cannot get to school.

These children are literally being left behind.

Because of the vast size of the Navajo reservation, the cost of maintaining the county roads used by the school buses is more than the counties can bear without Federal assistance. I believe it is essential that the Federal Government help these counties deal with this one-of- a-kind situation.

In response to this unique situation, in 1998 Congress began providing direct annual funding to the counties that contain the Navajo reservation to help ensure that children on the reservation can get to and from their public schools. The funding was included at my request in section 1214(d) of TEA-21. Under this provision, $1.5 million is made available each year to be shared equally among the three States. The funding is provided directly to the counties in Arizona, New Mexico, and Utah that contain the Navajo reservation. I want to be very clear: these Federal funds can be used only on roads that are located within or that lead to a reservation, that are on the State or county maintenance system, and that serve as schoolbus routes.

This program has been very successful. For the last 6 years, the counties have used the annual funding to help maintain the routes used by school-buses to carry children to school and to Head Start programs. I had an opportunity in 1998 to see first hand the importance of this funding when I rode in a schoolbus over some of the roads that are maintained using funds from this program.

The bill I am introducing today provides a simple 6-year reauthorization of that program, with a modest increase in the annual funding to allow for inflation and for additional roads to be maintained in each of the three States.

I believe that continuing this program for 6 more years is fully justified because of the vast area of the Navajo reservation--by far the Nation's largest--and the unique nature of this need that only the Federal Government can deal with effectively.

I don't believe any child wanting to get to and from school safely should have to risk or tolerate unsafe roads. Kids today, particularly in rural and remote areas, face enough barriers to getting a good education. I ask all Senators to join me in assuring that Navajo schoolchildren at least have a chance to get to school safely and get an education.

My bill has the support of the Southeastern Utah Association of Local Governments and the Tri-State County Association of New Mexico, Arizona, and Utah. I ask unanimous consent that letters and resolutions from New Mexico, Arizona, and Utah be printed in the Record at the conclusion of my remarks.

I am pleased that Congressmen Tom Udall of New Mexcio, Rick Renzi of Arizona, and James David Matheson of Utah are introducing a companion bill today in the House. I look forward to working with them this year and with the chairman of the Environment and Public Works Committee, Senator Inhofe, and Senator Jeffords, the ranking member, to incorporate this legislation once again into the comprehensive 6-year reauthorization of the surface transportation bill.

Mr. President, I ask unanimous consent that text of the bill be printed in the Record.