The HBHC and particularly the SCI home care units are an important ingredient in the total rehabilitative care and ongoing medical care program of the VA. Unfortunately, in some areas, it's abused or poorly administered. The merits of such a project are very apparent and the implementation of such programs at all SCI Centers should begin immediately.

In the past few years PVA has placed a great deal of emphasis upon the need for a better and more liberal approach to the VA's provision of prosthetic equipment to severely disabled veterans. Like the HBHC Program, it is a continuing medical program specifically intended to maximize the independence of the afflicted veteran. Such independence directly influence the individual's ability to adjust physically and promotes total rehabilitation. In simple terms, the better he is equipped with prosthetics, the more he can do for himself and the sooner he leaves the hospital. At a cost of $128 per day, it seems wise to expend a little more to make the veteran independent, improve his mobility and assist him to leave the hospital. A simple matter of economics.

PVA conducted an extensive research project for the Veterans' Administration as to the prosthetic needs of certain quadriplegic veterans. The initial reaction of the VA to our findings was favorable. They agreed that more needed to be done in this area in terms of product evaluation, product research and development as well as to improve VA's delivery system. Unfortunately, there is where things began to bog down for very little has come in the way of increased funds to carry out such proposals. They are aware of many of the needs of the severely disabled veteran but seem to be waiting for Congress, by some intuitive power, to deduce on their own such needs and provide appropriate funds. It is as though the VA is afraid to state its needs or those of the veterans they serve. (The conclu sions of Quad survey and legislative recommendations are in information packet.) These are but a few of our observations of the function of the VA medical and health care delivery system. Before leaving the subject of health care, I would like to refer you to the statement made by our Executive Director before a Veterans' Administration Press Conference on Spinal Cord Injury January 12 of this year. There he states that the strongest asset of the VA Spinal Cord Injury Service is its theoretical concept. He explains there exists a wide gap between theory and practical reality. I quote, "Rather than a national program of Centers for the care and treatment of spinal injury there exists a loose confederation of 18 hospitals that operate a spinal cord injury service in conjunction with other medical specialties. These other disciplines compete within the hospital setting for space, funds and physicians to serve their medical clientele . . . by the combination of various specialties under one roof there exists intense competitiveness and quite often the implementation of a system of priorities within the hospital that reflects the persistence of a doctor's opinion rather than one of patient need." We observe this to be true.

No where within the VA system does there exist a true SCI Center, a hospital whose single mission or even principle mission is to provide medical services to the spinal cord injured veteran. The preceding theory must give way to practice or otherwise a strength will become nothing more than a weak metaphor.

What can we do in the areas of medical and health care to improve the lot of spinal cord injured veterans? Probably we should begin with those things PVA can do. PVA will strive to provide this committee with the necessary facts in as fair and impartial a manner as possible in order that you can make wise and appropriate decisions. We shall continue to provide counsel and assistance to newly injured veterans to enhance their opportunities to acquire the prosthetic equipment, housing and support services necessary to live outside the hospital environment.

We shall work diligently with the VA to educate both them and our constituents as to needs and available services within the VA and those provided by other resources nationally and locally. We will work towards better understanding of individual needs and problems as they relate to our disability and veterans with other disabilities to assure against any infringement upon their rights. We promise you our best effort and our excellence.

What can the VA do? In our opinion the VA can begin immediately to correct existing problems by a change in general attitude from one of benign neglect to one of advocacy for the veteran. We certainly believe that no one within the VA is anti-veteran or is against helping them. But so often they seek only to provide help when things have degenerated to minimal or even subminimal standards. Then it becomes a situation of "catch-up" rather than planned progressive improvement.

The VA should begin active planning of programs to evaluate the current status of disabled veterans to include their identification, physical evaluation, evaluation of their rehabilitation potential and basic needs for a productive and enjoyable life. With this knowledge in hand, they could then begin a more active plan of medical restoration with plans for long-term medical needs to insure the best possible chance for the individual to live outside the hospital environment. All program of therapies could be maximized to make best use of the time an individual must remain hospitalized.

The VA should begin immediate action to correct those areas identified by Congress and those uncovered by the research efforts of PVA and other veteran's organizations.

And now we come to what you, the Congress, can do to alleviate many of the existing problems. First we suggest you begin by conducting intensive oversight hearings into VA's health care delivery system. We don't propose this be done with any malice but in a constructive nature to find and assist the VA in correcting those areas in need. Visits to hospitals with staff research teams, on-site committee hearings to maximize hospital staff and patient involvement would be productive. Your initial concept and theory was good, now it is time to roll up our sleeves and get down to work. You must provide the necessary leadership if the system is to work and the best form of leadership is to lead by example.

Following our interest in health care, PVA's concern has been and continues to be the disability compensation and disability pension programs.

Historically, VA Disability Compensation has been just that: payments made to veterans disabled in service. The intent is to compensate those veterans for their loss of income-producing capability and their foregone productivity. At this point we do believe payments for most of the disability ratings in section 314 of title 38 are adequate. This assumes this committee will continue with its excellent record of cost-of-living adjustments to the payment levels.

There are, however, several problems with the rating system for veterans with multiple serious disabilities. Under the current rating system, the more severely disabled are not compensated adequately or in proportion to lesser disabilities. For example, a quadriplegic receives no more compensation than a paraplegic, or, if he were to be blind as well as paralyzed, his compensation would not reflect this degree of incapacitation. There exists a ceiling upon monetary benefits which is excessively restrictive. Years ago, when these severe cases had very short life expectancies and almost never lived outside the hospital, the rating scale was sufficient. Today, medical science is performing what once was called miracles and these veterans are alive and wishing to live a full life. The current system of rating compensation payments has not kept pace with the change and needs to be revised. We recommend that the Senate Committee, through its system of oversight hearings, begin to investigate the intricacies of determining compensation benefits to bring such benefits in line with real needs. We further suggest that a two-step aid and attendance program be adapted to provide for the extraordinary costs incurred by veterans with severe multiple disabilities. This too should be part of the research to be done by the oversight hearings.

We are waiting for the Veterans' Administration study of the pension systems as mandated under Public Law 94-432. There should be no major alteration in the current pension program until this report has been completed and thoroughly evaluated by Congress and the veterans' organizations. We shall work closely with the VA to get our input into this study. It is our strong contention that there are varying needs within the veteran community who are eligible for pension benefits. In a letter to the Veterans' Administration Chief Policy Staff we conveyed the following point of view: "The pension program as a 'needs' based program must consider the 'needs' of four distinct, but not necessarily separate, groups of pensioners: first, those veterans and dependents in the upper income levels on the VA pension roles; second, the aged veterans and dependents; third, the very poor veterans and dependents; and fourth, the younger catastrophically disabled veterans and dependents on the pension roles. The financial needs of each of these groups is different.

"We are obviously most prepared to address ourselves to the catastrophically disabled veteran. First, because of their costly disability, their financial needs are greater. Second, they are younger, the average age is 46, and would normally be in their peak income providing years. There are other facts to consider, but we believe it is desirable and possible to tailor a pension program for these veterans which meet their financial needs, yet gives them an incentive to find gainful em

ployment. Such a program would obviously help the individual veteran, and ultimately reduce the cost to the VA."

We must begin preparing for the future, for just down the road are a great number of World War II veterans who will be eligible for pension benefits. Indiscriminate use of this program could, in the end, place it into bankruptcy. Furthermore, as it functions today, over 3 of all pensioners are existing below the poverty level which is something certainly not intended by the current system. Still another problem is that veterans under similar circumstances do not receive equal benefits, a disparity needing further investigation through oversight hearings.

During the interim we suggest you prepare a realistic cost-of-living increase until a complete pension program can be implemented that will include the catastrophic veteran.

In our past appearances before this committee, we have urged major changes in chapter 31 of title 38, Vocational Rehabilitation Benefits. This has been one area in which we have chided the Veterans' Administration for its ineffectual programs and philosophy. From beginning to end, the VA deals with the problem of rehabilitation in a very haphazard manner. Within the hospitals there has been a deemphasis on educational therapy. The VA plans to place vocational specialists in every SCI Center has resulted in only two centers having such persons and they have failed to develop a comprehensive job description for the existing two. Vocational and educational counseling is sporadic and less than adequate. Even though it was the original intent of Congress that job placement be part of vocational rehabilitation, the VA has taken a myopic view claiming no statutory authority for placement. To give you a more complete picture of what the needs are for vocational rehabilitation among the severely disabled veterans and what isn't being done, we refer you to an enclosure in our appendix, "The Rehabilitation and Personal Readjustment of the Spinal Cord Injured Veteran" by Mr. James E. Seybold, Research Director for PVA. In order to take up the slack created by the weak program of the VA, PVA has contracted with HEW's Rehabilitation Services Administration to conduct a seminar and create a manual on the provision of service for disabled veterans. It is a sad commentary when we must turn to other agencies to accomplish the work that should be done by the VA.

Once again, we ask that you instigate oversight hearings to ascertain the quality and quantity of assistance given disabled veterans under chapter 31 of title 38. It is only logical to expect a good vocational rehabilitation program would assist not only veterans but the community in general through the utilization of human potential. It, in effect, turns human liabilities into assets.

We appreciate your kind attention. Time does not allow us to touch each item of concern nor to elaborate on any issue as much as we would like. Enclosed as part of the Appendix are the legislative priorities of PVA. We would like these to be part of the record. You have afforded us the privilege of an ongoing relationship with you and your staff. Through this method we shall deal with individual issues and provide specific and necessary supporting materials to assist you in making decisions.

PVA is striving to be an effective servant of the disabled veteran. We approach the task with all our energies and skills in an attempt to be as professional as the government employees and Congressional staff with whom we work. The manner in which you receive our organization is quite gratifying. Thank you very much.

STATEMENT OF JAMES A. MAYE, EXECUTIVE DIRECTOR, PARALYZED VETERANS OF AMERICA

Ladies and Gentlemen, my name is Jim Maye and I am the Executive Director of the Paralyzed Veterans of America. With me are some of the members of my staff. Among them are two graduates of law school, an engineer, a graduate in social work and a masters in rehabilitation. At the conclusion of my statement I hope you will take advantage of this professional expertise and ask any questions you might have relative to our observations and evaluations of the quality of care given the spinal cord injured veterans.

Our purpose today, is to give the public, through you, an objective evaluation of the Veterans' Administration's program for the care and treatment of the

spinal cord injury veteran. We will not gloss over important deficits in their program nor will we attempt to incite public indignation by over exaggerating them. We approach this task with a positive attitude for through its full measure the VA extends a valuable service to the members of PVA and all paralyzed veterans.

The most obvious and strongest asset of the Veterans' Administration's spinal cord injury service is its theoretical concept. One of a nationally oriented program that marries various medical disciplines for the specific purpose of treating victims of a particular disability type. As you are now aware the numerous disfunctions that accompany a spinal injury so complicate the process of medical treatment that one of the now existing medical specialties would be inadequate in the diagnosis and treatment of all the maladies facing a paraplegic. The common ailments of a paraplegic require the skills of a neurologist, dermatologist, urologist, psychologist, internist, physiatrist, nephrologist and neurosurgeon to name a few. Knowledge in the care and treatment of spinal injury is not universal among physicians. Because of this the VA has developed a process of educating a small number of its doctors in the provision of such care and charged them with the responsibility of the management of the various medical specialties necessary to sustain life and facilitate optimum recovery. The concept of patient management and the coordination of needed medical specialties by a spinal cord injury management team has proven overwhelmingly successful.

The logical extension of this theory has produced the concept of specialized centers to provide all medical and therapeutic services required for maximum physical restoration as well as psychological services to optimize emotional adjustment to this devistating disability. The VA and its attempt to institute this concept has designated 18 hospitals throughout the United States and Puerto Rico as Spinal Cord Injury Centers. Unfortunately here is where theoretical concepts and reality begin to separate. Rather than a national program of centers for the care and treatment of spinal injury there exists a loose confederation of 18 hospitals that operate a spinal cord injury service in conjunction with other medical specialities. These other disciplines compete within the hospital setting for space, funds, and physicians to serve their medical clientele. When a cardiac unit competes with an SCI unit prosthetic funds invariably go for the pacemaker rather than the wheelchair. Do not misunderstand our intention for we too believe the cardiac patient's needs are more urgent. But by the combination of various specialties under one roof there exists intense competitiveness and quite often the implementation of a system of priorities within that hospital that reflects the persistence of a doctor's opinion rather than one of patient need. It is our recommendation that the VA create a true Spinal Cord Injury Center, a hospital that is orientated towards the care and treatment of spinal cord injured veterans. And furthermore that centers be developed across the nation based upon demographic distribution of paralyzed veterans.

You have heard the gentlemen prior to me tell you of what the VA has accomplished. They are correct that the VA has done a great deal. But there is much more to do. Within the past year many VA physicians have solicited PVA Research Foundation to provide financial support for research when they could not obtain funds from the VA. The VA with a $20 billion budget spends less on research on a spinal cord regeneration than we do with a budget of $1.8 million. The VA must begin to provide the much needed funds for research into all aspects of spinal cord injury research.

In a continuing liaison with the VA SCI units we are plagued with requests from physicians for additional personnel in all medical and paramedical fields. The lack of training opportunities and promotional advancement has stymied many. Some are so discouraged they resign, taking with them valuable knowledge and skills which can only be obtained through time and service in a SCI unit. The cost of retraining nursing aids when there is a 100 percent turnover within a year is far more costly than appropriate training and advancement. Among the VA's many accomplishments are a number of dismal failures. The most critical of all has been the failure to develop a workable program of rehabilitation. The process of rehabilitating a spinal cord injured individual has many stages including medical restoration, psychological and emotional adjustment, evaluation of individual potential, education or training, and resettlement. The initial process of medical restoration is the strong suit for the VA with rare exception it can rank as the best. Recently, they have instituted new programs of

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family counseling, sex therapy, and hired more and better psychologists to assist the paraplegic work through problems related to the disability. The VA's progress in psychological and emotional adjustment for this particular group has been significant.

The education and training benefits provided today's veteran are mixed. For a veteran with a service connected disability or the man with a nonservice related injury, but still eligible for GI training benefits, the prospects for re-education are very good. For the non-service-connected injury no longer eligible for GI education benefits the VA can do very little to assist him. There still remains two stages of rehabilitation process in which the VA is very weak. In its attempt to evaluate and make apparent to themselves and the concerned veteran his individual potential the VA relies almost exclusive on paper test and few interviews with a clinical psychologist. These tests and interview usually occur at the very lowest point in the veterans personal esteem. His injury, the prolonged hospitalization, his search for new identity and other problems depress and retard his mentality and severely tax his emotional resiliency. Decisions are made as to his total future during this stressful period of his life. The real travisty occurs after the veteran has made his choice for the VA seldom if ever provides followup evaluations to ascertain any change in abilities, motivation or personal satisfaction with selection previously made. The veteran is allowed one change in his educational choice and is considered rehabilitated the day he completes his formal training.

This carries us into the next stage of the rehabilitation process, that of resettlement of the veteran back into community life. The VA does provide certain housing benefits to assist the veteran's life outside the hospital. The VA has also implemented an excellent program of hospital based home care to insure the more severely limited individual receives the aid for daily living. The program is a total success where in practice unfortunately most SCI units are still without a workable HBHC program.

Other steps in the resettlement process are totally ignored such as job counseling and job placement services. Little to no effort is made to help the veteran place into practice those skills for which he has been trained. He is completely on his own to find employment or employment services.

Lastly, the VA does not make allowances for changes in the individual capabilities to continue at an occupation. Therefore there is no on-going education program or retraining for those who must change careers. In effect the veteran is evaluated once, given limited choices, little chance to change his mind, no employment assistance and no reconsideration if the choice turns out to be a failure.

The VA has great potential for an intensive program of rehabilitation. In order to reach this potential they must reevaluate their own program and begin providing those services necessary to complete the rehabilitation process.

The points discussed today are very general in nature and are not a complete picture of the VA Spinal Cord Injury Service. Overall we would rate the service about a seven on a scale of one to ten. The service is well conceived and provides more complete care than available in most civilian hospitals. But there is a great deal yet unaccomplished and it is the great desire of PVA to assist the Veterans' Administration reach these goals and further improve a good program.

SURVEY OF PROSTHETIC NEEDS OF CERTAIN QUADRIPLEGIC VETERANS CONDUCTED BY THE PARALYZED VETERANS OF AMERICA

RECOMMENDATIONS

We respectfully request that the following remarks be considered thoughtfully and with candor. All are either common concerns of those quadriplegic veterans interviewed or logical extensions of survey results.

1. That the results presented throughout this survey be studied carefully, and that the implementation of remedial action begin immediately in areas where dependency is most severe.

2. That a similar survey be conducted among paraplegic veterans. It is important to learn whether or not the high rate of quadriplegic dependency established herein extends to paraplegic veterans.

3. That consideration be given to the publication by VA on a "self help device brochure" detailing available equipment for every area of quadriplegic care, and that this publication be made available to all paralyzed veterans.