Preventing Secondary Conditions Associated with 
Spina Bifida or Cerebral Palsy Symposium 
February 17-19, 1994, Crystal City, Virginia

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Increasing Access to Personal Assistance: Americans with Disabilities' Insurance Policy for Staying Healthy, Well, and Productive
Bob Williams


GOOD HEALTH and disability. To many, if not most Americans, these two concepts are contradictory. Even many people with disabilities and their families view good health and disability as opposite. We have accepted and internalized the idea that as individuals with disabilities, good health can never be fully ours. Illness, the onset of secondary disabilities, and decline in quality of life are our destinies.

We must challenge this type of thinking by professionals, family members, and the general public-and, most important, in our own hearts and minds. That is where this mindset is having its most damaging and lasting effects. Equally damaging effects are being produced in the life and well-being of our nation, its economy, and its health care system as well.

The first step is to challenge this assumption directly as being based on the same kind of myth and stereotype that has always led to discrimination against persons with developmental and other disabilities. This is the same kind of discrimination that necessitated the passage of the Americans with Disabilities Act.

Recognizing this, openly and persistently, is very necessary, for over time, I believe, it will better equip people with disabilities, our families, and the health professionals we work with to learn and benefit from some important lessons. The first is that prejudices and low expectations continue to badly underestimate and undercut the health status and needs of Americans with disabilities of all ages.

It is not simply the prejudices and low expectations of others, though these certainly have done much to marginalize the health and economic well being of people with disabilities in our country. It is also those similar misperceptions about our health that we ourselves have allowed to creep into and guide our own lives and expectations.

Learned helplessness is the greatest crippler anyone can experience. The one effective antidote is to put a person in charge of his or her own life. This is one of the critical cases that, I believe, helps make the point: Many people with developmental and other disabilities have learned that in some ways it is easier to accommodate themselves to the perceptions of others than it is to demand either more from themselves or what is fair and right from others.

They have learned to be passive. To view themselves as being helpless, especially where questions of their own health and well-being are concerned. I do not think any individual with a disability is completely immune from such feelings. Why? Because, whether we were born with our disability or acquired it, most of us have come to live life viewing our health as something immutable. Just one more thing that is beyond our control.

I grew up with cerebral palsy. Looking back, I see now that one of the central messages that I and most others with my disability got was that cerebral palsy was a static condition. That is, in the vernacular of the day, it was not something that got worse. However, implicit in the same message was the idea that if cerebral palsy did not get any worse, it certainly did not get any better, either.

Another central message: That in many ways our health and our disabilities went hand-in-hand. Society, our doctors, parents, and others all told us the same thing: Our health and disabilities were inextricably linked. Inextricably, beyond the pale of our power and influence to change or control.

I might be overstating the case here, a case that might be unpopular with some. But I make it for what I believe are good reasons. Because the second step in challenging the assumption that health, wellness, and disability do not go together is to take a second look at what we mean in our country by the term good health. This must be done not only in the interest of Americans with disabilities but indeed that of our nation's health and well-being as as a whole.

Because for far too long, most have taken it for granted that the term good health is synonymous with the absence of disability, illness, and injury. We must challenge this. The year 1994 presents us all with the opportunity and the responsibility to do just this, the opportunity and the responsibility to focus our thoughts and energy on more than reforming the way health care services get delivered in the United States.

This is of course critical. Health care costs now make up 14% of GDP. If nothing is done, by the year 2000 nearly 19% of America's GDP will go toward health care alone. Hence, most Americans, and most sectors of our economy, now believe something must be done to bring down and to hold down these exorbitant costs. But, if we are to be successful at holding down costs and investing in people's futures, we must do something much more fundamental than improve health care delivery.

We must rethink and revamp our collective definition of what we mean by true health in our country. We Americans with developmental and other dis-abilities, our families, and our allies must play a significant part in this. We know better than most people that good health is indeed much more than the absence of sickness, injury, or disability. That true health is really about having the ability, assistance, and support to achieve greater choice and control in life.

This brings me to what I was asked to address in this paper. That is, of course, how personal assistance can be relied upon to enable people with disabilities to obtain and maintain good health. Let me point out that just as I use a different definition of good health than most, I also use a somewhat more expanded definition of personal assistance. The typical definition of personal assistance is that of one person assisting another with tasks that the individual would do for himself or herself if it were not for a disability.

My definition is more expansive in that to me it includes any form of assistance that I require and use to lead life as I choose. This includes a great deal of assistance from my partner and others with everyday tasks. Tasks such as bathing, dressing, eating, and managing the paper flow that threatens to overtake my desk and my life.

But it also includes much more. Like the assistance I receive getting up from the floor or walking across an uneven path of ground or ice from my trusty canine confidant, Decoy de Mutt. Or, the increasing assistance and productivity that I look for, and frankly demand, that my Liberator [a computerized voice synthesizer] and other assistive devices provide.

In sum, for me personal assistance includes any sort of assistance that people with disabilities rely on to make our lives more personally and professionally productive. And, therefore, I believe, much more healthy ones to be leading.

Taking this view and this approach to personal assistance, I believe, has improved my life, my health, my work, and my outlook tremendously. But I am something of a Johnny-come-lately to doing so, as I think far too many people still are. Because, again, like many people with disabilities my age, for much of my life I accommodated to the rest of society's thinking.

How? By accepting the proposition that if I was going to have any real chance of being seen as anything more than a pitiful cripple, I had to prove I was one mean, self-reliant man. That in turn meant one thing to me: Doing everything myself exclusively by myself, and that is exactly what I did. Starting in my teens, throughout college, and well into my career, I lived the life of what others have described as a latter-day Sisyphus.

I showered myself every day, even though on occasion I slipped and fell with obvious consequences to my health. I attempted to shave myself until I managed to cut and nick myself so often that it was easy to rationalize growing what soon became an unkempt beard-a seldom acknowledged sore point in my life.

I also dressed myself daily, with mixed results. But usually at the expense of my time, effort, and self-esteem. I ate out almost every day during those years as well, usually at the same cafeteria. One, because I enjoyed it, and two, because it was the easy thing to do.

Because I fed myself, I choked a lot, which not only posed an immediate threat to my health and life each time it happened but over time started to tear a hole the size of a quarter in my stomach. It was not until after I met Helen, and she threatened not to stick around to watch me aspirate, that I fully sized up the situation and began to change much of my approach to life.

This is not to say that those years were bad ones. In fact, my times in college and those that followed were some of the happiest, most productive and fulfilling by anyone's standards. However, looking back and looking ahead to the future-both my own and that of others with disabilities-I do want to suggest one thing.

There is a better way. A healthier, more productive, and efficient way for Americans with disabilities to live life. This way includes having ready access to a wide array of personal assistance services and supports. Personal assistance that puts the power, supports, and resources where they belong: In the hands of people with disabilities.

This needs to begin early. Young people with developmental and other significant disabilities should be introduced to these notions of personal assistance early on. So that, even beginning as young as four or five, when they would otherwise be developing a sense of control and mastery over themselves and their environment, kids with disabilities start to view and use personal assistance in this way. So that, rather than having their mothers continue to do things to them and for them, such kids can learn to see and use personal assistance as their ticket for manipulating people, places, and things.

I use this word manipulating on purpose, knowing that especially when it is used with reference to persons with disabilities, it takes on negative connotations. And knowing, too, that disabled or not, we were all put here to do just that: to manipulate, interact with, and change our world. Children do this most of all.

In the past, of course, a child's disability and society's reactions to it have often interfered immensely with this process. With the advent of assistive technology, service animals, and personal assistance, this no longer has to be the case.

I was fortunate to be among those who got a generational jump on things. Although we never heard of personal assistance back then, my parents had a knack for doing things with me rather than for me and making me believe I had a controlling say in my life. One reason I felt this way had to do with the twenty-questions style we developed of communicating with each other.

Not only did we use this to enable me to convey to my parents, my four brothers and sisters what was on my mind. But my parents, and especially my mom, insisted that my doctors, therapists, and teachers use it as well. I will always remember one incident in particular.

I must have been eleven at the time. We had been sitting in the waiting room of the Newington Children's Hospital all that day. But when we finally got in to see them, my mom knew I had something to say. So she had a world-famous neurologist and a roomful of his underlings figure out and then answer my questions about why, if I had not had a seizure in three years, I was still taking Dilantin. After all the questions were answered that day, I didn't take Dilantin again. Nor did I ever have another seizure.

But, by far the most lasting lesson I learned that day was that I possessed the power, choice, and control to influence my own life, health, and future. Others need to learn this same lesson. Indeed, as the President and the First Lady have pointed out many times, it is only when ordinary Americans take responsibility for our own health and well-being that we as a nation will achieve true health reform.

Taking on this added responsibility requires that each American exercise increased choice and control in life. For millions of Americans with disabilities, this in turn means having increased access to the wide array of personal assistance services I alluded to earlier. President Clinton understands this well and is leading the way to expand this much-needed access and the opportunities that will result from it.

By welcoming people who use personal assistance like Assistant Secretary Judy Heumann (of the Office of Special Education and Rehabilitative Services, U.S. Department of Education) and I into his administration, the President is sending a powerful message, throughout the federal government and, indeed, to the rest of the nation. The emphasis should not be on what Judy and I and other Americans with significant disabilities cannot do for ourselves, but on what we can do for our nation if given access to the right support and assistance to do so.

The President is sending this same powerful message in the personal assistance provisions of the Health Security Act (HSA) now before Congress. As the President pointed out in his recent State of the Union address, these provisions of the bill represent-if not the total answer-an important beginning-an important investment in the lives and futures of Americans with significant physical, intellectual, and psychological disabilities of all ages and backgrounds.

It will do this by shifting resources away from institutional placement toward supporting persons with disabilities and our families in our communities, where we have always rightfully belonged. In the first five years, $80 billion of new federal funds will be made available to states to develop and expand consumer-driven Personal Assistance Services and other vital community support services.

This major new investment in putting people first is expected to expand access to personal assistance and similar supports to an estimated 3 million Americans with significant disabilities regardless of their age, income, or type of disability. The Health Security Act will do this by targeting the personal assistance benefits to people with the most significant physical, intellectual, and psychological disabilities.

The bill leaves it to each state to define the scope of the personal assistance benefit. But HSA will require that at a minimum, personal assistance be afforded to persons who need direct, stand-by, or cuing assistance with three or more activities of daily living needs. The act will also mandate states to offer both agency-provided and consumer-directed personal assistance services.

The legislation will likewise foster the historic development of a three-way partnership among the states, the federal government, and people with disabilities and our allies. A working partnership focused on developing and delivering truly consumer-driven personal assistance services. The Health Security Act will guarantee that states get all the flexibility they need, want, and deserve in de-ciding how personal assistance and long-term services are designed and deliv-ered. But the act makes clear that states must share this new-found flexibility and creativity in decision making with people with disabilities, our families, and allies.

Specifically, it would do this by requiring each state to have an advisory committee made up of a majority of persons with disabilities, our families, and allies. Such committees can have a major say in the design and direction of PAS and other long-term services in each state across our land. Along similar lines, the personal assistance and other long-term services provisions of the Health Security Act also will:

• require states to offer consumer-directed PAS under the new program.
• maintain Medicaid home and community-based services for people who do not qualify for the new program.
• create a tax credit for people with disabilities who work and pay out-of-pocket expenses for personal assistance services.
• require states to honor consumer choices regarding services and providers to the extent possible
• give states the option of offering vouchers or cash directly to eligible persons.

In October 1992, candidate Bill Clinton pledged that as president, he would work to "make affordable personal assistance services available to Americans with disabilities." In doing so, he stressed that such services "must meet the needs and desires of the user, not the dictates of the supplier." Together, these crucial provisions of HSA I have just described can pave the way for achieving this vital aim. But, only if we act now to educate policy makers and the public to the fact that, for people with disabilities, having access to personal assistance truly is our insurance policy for staying healthy, well, and productive.

In conclusion, on the basis of the points I have raised here, I strongly believe that Americans with disabilities, together with our families and allies, must lead the way in carrying this critical transformation out by:

• Challenging the dual assumptions that true good health is beyond the reach of individuals with disabilities and that illness, the onset of secondary disabilities, and decline is the most we can look forward to in life.
• Recognizing that this kind of thinking is based on myth and stereotype, which has always resulted in discrimination against persons with disabilities and continues to badly undercut the health status and needs of Americans with disabilities of all ages.
• Challenging similar prejudices and low expectations regarding our own capacities to lead healthy lives that we ourselves have allowed to creep into and guide our own lives and expectations. Rather than viewing our health as just one more thing beyond the pale of our power, we must begin to recognize it as being well within our reach and influence to change and control.
• Rethinking and revamping our collective definition of what we mean by true health in our country as being much more about having the ability, assistance, and support to achieve greater choice and control in life than about the mere chance of sickness, injury, or disability.
• Realizing for ourselves and making others see that there is a healthier, more productive, and efficient way for Americans with disabilities to live life. This way includes having ready access to a wide array of personal assistance services and supports. Personal assistance that puts the power, supports, and resources where it belongs, in the hands of people with disabilities.
• Introducing young people with developmental and other significant disabilities to the powers of personal assistance early on so that they can begin to use it to develop a sense of control and mastery over themselves and their environment.
• Educating ourselves, policy makers, and the public alike to the fact that, for people with disabilities, having access to personal assistance truly is our insurance policy for staying healthy, well, and productive.
• Educating ourselves, policy makers, and the public as well that the personal assistance provisions of the Health Security Act represent an important national investment in the lives and futures of Americans with significant physical, intellectual, and psychological disabilities of all ages and backgrounds.
• Insisting that this major expansion in access to personal assistance and similar supports to an estimated 3 million Americans with significant disabilities remains in the final version of President Clinton's Health Security Act approved by Congress.
• And, insisting that states not just get all the flexibility they need in deciding how personal assistance and long-term services are designed and developed, but that they share this new flexibility and creativity in decision making with those for whom it can do the most good: people with disabilities, our families, and allies.

Together, we can achieve this much and more; and together we must.