As the mother of a young man with many disabilities, it is difficult for me to write about the policy issues surrounding institutionalization. These are very personal and emotional issues. I have been firmly committed, on moral grounds, to the closure of all large institutions since I first learned about the nationwide effort to do so. My son with disabilities was young, and I was learning about what place he might have in the world. I learned then that there are more viable and humane options than the institutional model. I learned that a small “community group home” can be as restrictive as a large state institution, if it is licensed under ICF/ MR standards.

I learned that a regular life would be possible for my son, but that the availability of sufficient, decent, inclusive, community-based supports is by no means guaranteed in modern day America. Some people have a lot of paid support; some people have little or nothing. Some agencies are paid a decent rate to support someone; some agencies could not function without donations to supplement unrealistic state contracts. Some agencies do a really good job with the resources they have, others do not. Some families have access to individualized budgets that are sufficient to provide decent, reliable supports; some families live a lifetime on a waiting list for support. Though this is the wealthiest society in human history, many people have to work hard to ensure decent basic supports for our most vulnerable citizens. If they are lucky, parents and people with disabilities can choose among a few options for long-term supports. Even full-blown self-determination models are based on budget limits and restrictions. Many people have no options. I do not know any individuals who actually have their “choice.”

When my son was a baby, I rejected institutional placement when it was offered as a way to help me cope with caring for him. The harder thing to write about is that over the years, I also rejected various more subtle suggestions that my son “would be better off dead.” Nosy neighbors, passers-by, and even health care workers still suggest, randomly, to unsuspecting parents: “The world is better off without your child. You and your family would be better off.” The concept is, of course, absurd. I used to think it was just happening to me. Now, I think it is surprisingly common. Years ago, I heard Ed Roberts tell the story of going out and having people sidle up to his wheelchair, smile, and say, “Son, I'd rather be dead than be like you.” It was a comfort to me to learn from Ed that the proper response was the impolite form of “Buzz off.” It was a comfort to realize that I am not imagining the huge prejudice that people with disabilities sometimes endure.

Modern society puts parents of kids with severe disabilities in a terrible bind. We are often told that we and our families would be better of without our beloved but disabled child. Sometimes death is the suggested alternative. We are sometimes told that there is a middle ground to be achieved by sending our children somewhere else to live. “They will be well-cared-for,” the message goes. “You can have a normal life.” We are seldom helped to understand (as I was) how to have a good, ordinary life with our child at home. Even less often are we given access to the information and supports we need to make that possibility real.

I am overcome with sorrow when I think of parents who chose, as one woman told me her ex-friend did, to drown the baby in the bathtub rather than face society's disappointment, disapproval, and disinterest. I have heard a mother speak from the bottom of her heart and the bottom of her pain when she said: “If they were not going to help my son live a decent life, they should not have worked so hard to keep him alive in the first place.” We parents are doing our best, every day, each of us in our own way, to keep our sons and daughters alive and loved (not just warm and dry), to give them their best shot at a life worth living, considering the realities and the possibilities that our community, society, and government make available. I believe that Voice of the Retarded (VOR) parents love their sons and daughters as I love mine. I believe their commitment is the same as mine.

We make this commitment against what sometimes seems like a tidal wave of contempt that our society shows for people with disabilities. Continually, in hundreds of little ways every day, we and our children can catch a glimpse of the worst in people: the sneers at the grocery store; the stares at the restaurant; the brutal insensitivity of the wealthy athlete in tennis gear parked in the disabled spot; the legislator who thinks Medicaid funding is a frill; the pastor who feels it is his duty to tell you your child is too depressing to be brought to church; the local journalist who writes a very rational article about “those” children using up resources at “our” schools; the accessible bus driver who will not stop or lower the lift; the principal who laughs and says, “Well, you can always sue us”; the vapid movie star or comic who makes unkind and unthinking jokes. Even for people like me, whose general experiences with professionals, systems, and communities have been very positive, ignorant little messages sneak in around the edges. Few of us escape without noticing a few such remarks or images that cut to the quick, if only for a moment.

How to respond? Hide our sons and daughters? Send them away? I am proud my family is among the families who stand up and say: “This is my son. This is my daughter. He is fully human. She has feelings just like you do. She has rights, too. I want what is best for him. He belongs here just like you do.” My family has chosen to live our lives as a form of advocacy. I am pretty sure I am one of hundreds of thousands, maybe millions of families who take this approach. To express this fundamental advocacy, our sons and daughters must be present. They must be visible, every day. They must be of their community, not visitors to it.

I often think of my son's presence in the community as a kind of advocacy that goes beyond words, laws, and explanations, as if he were always projecting: “Here I am. What do you think about that?” Sometimes you can see a wave of thought run through a crowd. When some people see or hear my son, they look to accuse first: “Can't you keep him quiet?” Then they look around for a group of disabled people, or they look for staff with whom to make eye contact: seeing none, they struggle visibly to figure out, “What is he doing here?” Mostly, severe disability terrifies and confuses people. Many avert their eyes. Of course, many “get it” too, and that is why it is important to keep going. The older my son is, the more people are either positive or they do not pay any attention at all: I take it as a sign of cultural progress. His presence is advocacy. There he is, doing his work at Starbuck's, at a concert, at a library, at the movies, rolling down the street. I sometimes want to get him a shirt that says, “This is my life. Deal with it.”

Every family deals with disability in different ways, and love takes many forms. Some parents value safety above all else, sometimes because they have to. Many just want their children and their families to fit in or belong. Other parents, many of them baby boomers, value experience, aspiration, achievement, and effort; they seek paid employment and home ownership for their sons and daughters who have disabilities. Others live to advocate. But we all love our sons and daughters. We are on a road together: we respect our sons and daughters, learn from them, teach them, teach each other, struggle, hurt, manage, love, appreciate. I recognize most of the involved parents, families, and advocates of people who live in institutions as fellow travelers on the often difficult—but profoundly worthwhile—road of loving a person who needs a lot of support. That said, I am deeply troubled that some family members of institutionalized people feel it is okay to demand that they travel this road in limousines with all the funding they want while the rest of us make our way on foot with only the funds that are left over.

Our nation has articulated right and just goals to promote the inclusion of people with disabilities in our communities. These goals were constructed long after the big state institutions were built. The goals were intended to bring change. The goals result, in part, from a growing awareness of “man's inhumanity toward man” that arose after World War II. In its aftermath, a universal awareness of the importance of human rights led wise people to examine our own policies of exclusion, segregation, and institutionalization of certain people. The movement to normalize the lives of people with disabilities came first with parents' groups such as The Arc (formerly called the Association for Retarded Children, or ARC), and from thinkers like the international human rights worker and philosopher Bengt Nirje, who came to Minnesota to learn from the parents of the old ARC. The movement has been built on the work of many powerful people whose intellectual history, powerful and varied and individual, blends together into the idea that institutionalization is bad for people with disabilities. Even more important, it is wrong; and because it is wrong, it is bad for society to invest in it.

Institutionalization is bad because it causes people to develop institutionalized habits, to be afraid, to be vulnerable to abuse. People I know who have lived in institutions experienced it as judgment, rejection, and abandonment. Institutional life is too cold, too controlled, too unnatural, too risky, too hard, and too lonely. Indeed, in the old days many institutional residents did die very young. Many were kept from contact with families who loved them or would have loved them. Attempts have been made to improve the model, by encouraging more family contact, and creating community contact, and even by creating regulations that require “active treatment” rather than allowing people to simply languish or spend their life under medical care. Intermediate Care Facilities for the Mentally Retarded (ICFs/MR) regulations created decades of improvements in institutions, but they could only go so far.

The ICF/MR rules were written, hastily and based on a reaction to the horrors of Willowbrook, Pennhurst, Partlow, and dozens of other institutions, using concepts and processes to correct perceived wrongs. They were written to “fix” people who were seen as broken, in an era when the goal was therapy and treatment, not supporting people to live a decent life. They were written long before the Americans With Disabilities Act (ADA) and its “new paradigm” of disability policy, which says that people with disabilities have a right to participate in the life of communities as all people do and that they have a right to be accommodated to do so. The ICF/MR regulations are based on the desire to fix a person using active treatment. The ADA and the Developmental Disabilities Act (DD Act) are based on a principle that says a person with disabilities does not need to be fixed. At one time, ICF/MR regulations represented the best thinking. Now, in my opinion, they are out of date and perhaps fundamentally at odds with the rest of American disability policy. National policy in the United States is based on the powerful idea that

disability is a natural part of the human experience that does not diminish the right of individuals with developmental disabilites to live independently, to exert control and choice over their own lives and to fully participate in and contribute to their communities through full integration and inclusion in the economic, political, social, cultural and educational mainstream of United States society. (Developmental Disabilities Act of 2000)

Inclusion, not treatment, is our proper goal.

Parents who join VOR and even legislators often talk about the distinction between the institution and the community. A better distinction is the distinction between treatment models of long-term care, such as ICF/MR models, and individual inclusion and support models, which are more congruent with the ADA. The same ICF/MR regulations that drive institutional programming are also used in the community, creating little institutions in regular neighborhoods. I would not be surprised if some of the community group homes cited by VOR are actually regulated under ICF/MR rules. There is no way for me to know if the low-quality community supports the VOR mothers are concerned about are really ICFs/MR. An ICF/MR must have at least 4 residents and can have hundreds. Many of the community-based nightmares, such as those cited in the Washington Post reports of abuse in DC community group homes in 2000, are really reports about ICF/ MR-funded models. So active treatment and the tracking that VOR likes—hallmarks of the ICF/MR model—do not automatically protect against abuse, even if they can hide it for awhile.

Outcomes are expensive to achieve under an active treatment model because efforts to include the person with the disability in ordinary community activities, such as going out to eat, need to be disguised as treatment opportunities. In the same way, day habilitation programs often try to make day-wasting look like work. So we say someone has a community inclusion program and is learning to order from a menu rather than that they like to go out for pancakes. Or we say that they “have been learning to brush their teeth for 35 years,” as one institutional mom said in a newspaper interview recently. One friend told me that his cousin has a “walking program” in his community-based ICF/ MR. He is not allowed to go out for walks unless it is part of the walking program designed to achieve his walking goal. Check marks are made on sheets of paper when he “does” his walking program. What does the outcome look like for this activity? Is it the same as the man living next door with Home and Community Based Supports (HCBS), who just goes out for a walk sometimes when the weather is nice or when he feels like it? It does not take a philosopher to see that the difference is huge. Some of the people who explained this difference to me are, in fact, the people who are stuck running ICF/MR community group homes when they would rather convert to waiver supports. Many ICF/MR operators would prefer to convert to waivers and serve people by individually or by twos or threes, if only the funding were available and reliable, and if only the real estate could be sold. These folks know how much time and effort it takes to make a free, organic outcome look like a programmed, active treatment outcome to fit ICF/MR regulations. We should ask them: How much time do you spend trying to make a real life fit into an active treatment framework? Their wasted effort is also an outcome of the ICF/MR model.

My own son's outcomes in the community and in our home are vastly different from and, I submit, better than any that could be achieved under ICF/ MR regulations. Charlie has received various family supports, waiver supports, community supports, and individual supports since he was about 10 years old; sometimes more, sometimes less; often insecure. Frequently, we have to go the legislature and advocate against VOR to keep sufficient funding in these supports. Charlie's supports have allowed him to grow up at home with his parents and his brothers, who know him, help him, love him, and treat him as they treat each other. He attended ordinary schools, where he got to know hundreds of kids and they got to know something about living with disability. His life is decent and certainly not perfect— whose is? Still, his life is full of joy and meaning. He is a terrific guy, a nice guy, a charming guy (if I do say so myself). He learns new skills in an organic way. He is exposed to new skills and ideas and shows us when he is ready to move forward. He will not be spending 35 years learning to tie his shoes, brush his teeth, or wash his hands. He gets to watch operas of his choice at home when he wants to see them. He works as much as he can manage and would like to do more. He volunteers when he can. He likes to swim for exercise at the municipal pool. He gets his health care in the ordinary system like everybody else. He had his gallbladder removed last October, and—surprise!—he didn't need a “special” doctor to do it. Turns out he had a regular gallbladder, not a “retarded” gallbladder. He goes to the same dentist office I do. (I admit I seek out dentists who have the skill and creativity to treat people with intellectual disabilities/developmental disabilities (ID/DD): They are always the best dentists).

People know Charlie. People like Charlie. He is a neighbor. He gets a chance to do things that are not planned and approved by me. He hangs out. He has his eye on the girls. He wants to move out of the house. Though he does not speak, he has testified once in the Maryland legislature and once in a Congressional committee: Since he turned 18, I try not talk about him without him. He attends rallies for better community supports. He is a citizen. He can be loud and unpredictable. His key support professional, Nate, says that they are “co-workers in community integration.” I need to be clear that my Charlie is one of the more disabled people I have ever encountered (including the sons and daughters of VOR parents I have met and people I have seen in large state institutions). He does well in the community because his supports are individualized and his family is supported and involved, not because he has fewer disabilities.

The debate about whether large state institutions should close is not really a debate. The American public has made a decision: They are closing, inexorably. Total ICF/MR spending, including spending for smaller community-based ICFs/MR, was overtaken by the HCBS Waiver model in 2000, as more and more states are learning that state government does some things well, but directly operating large programs for people who are vulnerable is not one of them. The numbers of persons served in HCBS Waivers far outweigh the numbers of persons served in ICF/MR models. A decision to concentrate on developing individual supports and services (such as those provided by waivers) is playing itself out in state legislative budgets across the country, slowly in some places, faster in others. In states where institutional placements cost more than the national average of about $135,000 per year, legislators should be asking whether keeping the institution open is fiscally responsible. In my professional judgment, the trend is not driven by cost, nor should it be. It stands to reason that some individuals will have support needs that cost more to fulfill than the average cost of ICF/MR care: They still have rights. Whether it costs more is not the question, nor is parental choice the question. We must ask: Which model is more congruent with modern disability policy? Which model is better for people with disabilities, their families, and society?

Institutional closure is a trend, here and in advanced nations around the world, and so is the development of reliable individual community-based individual supports designed to ensure that people are included and integrated in society. Here in the United States, as in most developed nations, many parents and siblings have advocated for inclusive supports in ordinary communities. The Arc and others have worked hard to maximize the availability of high-quality individualized supports in American communities. The VOR's fight to keep the ICFs/MR open for a few hundred people deprives thousands of people of the opportunity to have high quality community supports. Parents need to be fighting—all of us, together—to make community supports better for all people, or we will be left with mediocrity everywhere. Together, we must choose (and I submit that this is our only real “choice”): Do we want crummy institutions and unstable community supports, or do we want community supports for all? Our work is cut out for us.

Though we have much work yet to do, parents have been a powerful voice for the Developmental Disabilities Act, for IDEA, the Rehab Act, Social Security, and the ADA, and for supported employment, inclusive education, personal assistance, waivers, family support, self-advocacy, and consumer-directed supports—and everything in-between. Congress can do much to strengthen many of these programs by bringing their funding up to modern, decent levels. Families need these programs if we are going to be able to do what is required of us under the new paradigm.

Across the United States, families still provide more support than do any other part of the system. Somewhere between 60% and 80% of people with intellectual and developmental disabilities live with a family member. The faceless “advocates” that the VOR parents decry are none other than thousands of parents and families doing their best to encourage their nation to give us access to good information, good ideas, and decent supports in the community so our sons and daughters can live their own lives. We are the vast majority; VOR is a tiny minority, representing approximately 4,000 parents out of at least 4 million. It is not fair for VOR to go to the legislatures and say that they represent the parents of people with severe disabilities. They represent a small portion of those parents. It is not fair for VOR to say that they advocate for a full range of supports: I polled advocates and found that no one had ever heard VOR advocate in favor of creating better access to community-based individualized or consumer-directed supports; they only advocate for keeping the institutions open. They have even selfishly advocated for eliminating SSI for children with milder disabilities, saying it would take away from what their children received. They have advocated against The Medicaid Community Attendant Services and Supports Act (MiCASSA), which means they favor the forced institutionalization in nursing homes of people with significant physical disabilities. It is not fair for them to say they want their “choice” when it is at the expense of everyone else's basic needs and rights.

Should VOR parents have their choice? Why not let them decide? Because they believe their sons and daughters do better, or achieve better outcomes, or are safer in institutions, could we not leave them alone and respect their choice? Shouldn't we allow them to choose extra levels of care for their children because they believe they have more disabilities than do others? There are several key reasons why I believe it is not possible, right, or just to allow this “choice.” They are as follows:

  1. Parental control is never appropriate after someone becomes an adult. Most sons and daughters of VOR members are adults, not children. We should not be allowed to make “choices” that take all of son's and daughter's choices away. The VOR's attempts to codify what they define as “choice” have failed in the Congress and in the Olmstead decision of the U.S. Supreme Court. Here, as elsewhere in public policy, the individual rights of the person with disabilities outweigh the choices of family members.

  2. When some people choose public institutions, they are making a choice that affects everyone else's options. Costs for ICF/MR average about $85,000 per year (in large state institutions, it is closer to $135,000) compared to about $38,000 for an HCBS recipient.

  3. In order to justify the public expenditure, the outcomes of institutional placement, per dollar, would have to be as good as those achieved with consumer-directed support. They are not even close. Outcomes should be measured in terms of inputs.

  4. The VOR parents often say that their sons and daughters have more disabilities than everyone else, that they are “too disabled to live in the community.” There is no fine point to put on this; it just is not true. They say that 80% of persons who live in ICFs/MR have severe and profound disabilities. That is about 80,000 people (counting community ICFs/MR). This means that at least two thirds of Americans with severe and profound intellectual disability live with HCBS individual supports or with family. My own son is in this category. This is not counting the tens of thousands of people with severe disabilities other than MR/DD who are trapped in nursing homes.

  5. Some people who live in large state institutions have very serious medical conditions, and for some of them perhaps their medical needs have been well-served in the institutional environment. However, health care provided by state government is no panacea. If a few have been helped, many have been ignored. In some institutions, pulling someone's teeth out still counts as “dental care.” Many other people with equal needs, manage to stay safe and healthy with individualized supports. Yes, for some people with high needs for medical supervision, moving requires exquisite planning and careful execution of the plan, but this is not impossible, and health status often improves.

  6. The population of public institutions (and ICFs/ MR in general) is declining every year, making them even less economically feasible as time goes on. Fewer people choose to live in these places each year (unless they make the choice under the duress of having no other options). Costs are increasing, ever more rapidly, based not on the level of disability of the residents, or on the level of care they receive, or on the outcomes of that care. Huge old buildings are deteriorating, with calls from VOR for large capital expenditures to renovate them, further depriving people with few or no supports in the community of the supports they need to have a decent life.

  7. During the DD Act reauthorization of 2000, VOR sought unsuccessfully to limit the ability of Protection and Advocacy Systems to investigate and prosecute cases of neglect and abuse in institutions unless families agreed ahead of time that systemic abuse was occurring. Families cannot always know what is happening right under their noses, and many people in institutions live there without family oversight. The VOR was willing to sacrifice residents' basic right to protection from abuse and neglect just to protect their own right to “choose” an institution for their son or daughter. The absolute parental choice and control that VOR has sought would require far too much exposure to danger in the lives of people who live in institutions, especially those whose families have passed away or are absent. It is entirely possible that demanding this kind of absolute parental control also introduces risk and danger into the lives of the sons and daughters of VOR members.

It is dangerous to pit a parent's demand for control (or even convenience!) against a person's right to life, liberty, and happiness. Public policy should not support parental choice or control that limits someone's basic rights. Further, I believe that parents should not seek this kind of control. The parent community, self-advocates, and caring professionals all can support us to look into our own hearts, question our own assumptions, and evaluate our own motivations. We are too often left alone to figure out what is right.

Outcomes are difficult to assess. Valid and reliable measures cannot always be intuited by parents based on what they see and feel to be true, including parents like me, who are in the community. It would be helpful to have systemic measures that could compare all outcomes for people with disabilities in the United States, across all kinds of programs. In the interest of ethical government, I would hope that such measures would also include measurements of the outcomes of having no supports. States that assign the majority of their resources to a small minority of people who need supports, such as people who live in large ICFs/MR, should be held accountable for the total effects (or outcomes) of their funding decisions. If funding a few people at very rich levels means that many more go without any help, then that outcome also must be counted. Today in the United States, we know about 75,000 people are on waiting lists for MR/DD services. Because many states do not even keep formal lists, the true number is likely much higher. Their complete lack of choices is a one system outcome of institutional bias in the funding of systems.

One thing missing from the VOR discussion of outcomes, and often missing from other discussions as well, is an analysis of the systems outcomes of various models and ideas. Though it is true that programs of long-term supports and services should be measured in terms of how well they meet individual needs and achieve individual outcomes for each participant, programs should also be responsible for their systems outcomes, which include the nonproductive costs of fitting into outmoded regulatory schema, the unintended social effects of restrictions imposed by services, the political and economic disenfranchisement of families who must devote all of their time and resources to care and have no time for work or advocacy or even voting, and the unintended impact on the availability of supports for other people. I do not think we have thought this through yet. I will facilitate a session at the September 2005 Alliance for Full Participation on these issues, and I welcome participation and comments in advance. Why should a handful of families be able to choose a model of care that is much more expensive without being better, that furthers the denigration of and social misunderstandings surrounding people with disabilities, and that keeps thousands of other families from having access to basic, minimal supports? Why should some be able to choose a limousine, when the limousine guzzles gas, pollutes the air, and runs over other people who are struggling on foot?

Parents who have chosen institutional models have been told by staff, often for decades, that the institution is the best there is. Respectfully, it is not true. We can do better, a lot better. My son and my family are on the road to a real life and individual supports, and we have many thousands of fellow travelers. We would be happy to have VOR parents join us. They just need to step out of that broken-down limousine.

References

References
Development Disability Act,
PL 106-402; 42 USC 15001, Section 101 (2002)
.
McTernan
,
M.
and
N.
Ward
.
2005
.
Outcomes that matter: A parents' perspective.
Mental Retardation, 43, 214–220
.

Author notes

Author:Sue Swenson, MBA, Assistant Executive Director for Membership and Program Services, The Arc of the United States, 1010 Wayne Ave, Suite 650, Silver Spring, MD 20910. swenson@thearc.org