Including all children - emphasis on developmentally disabled children

As we write this invited essay for this special edition of Children Today, fall has come to America. The seasonal change that it brings reminds us that we have endured--and still must endure--another winter colored in greys and more to be borne than enjoyed. But it also reminds us that we have experienced a spring and summer that have been ripe with flowers and protean with possibilities. What a perfect time to reflect on the past and future for children with developmental disabilities and their families! What a perfect time to describe their movement from winter to spring and summer! And what a perfect time to suggest how the future--even with a harsh winter facing us--can be made warm and far more bounteous than past winters!

All across America families who have children with disabilities are in a late summer phase. They have cast off the dark garb, heavy and restricting, of their past winters. They still wear the bright clothes of spring and summer--the garments of FULL CITIZENSHIP, with liberty (in their choices about how to live), with equality (in their opportunities), and with community (through integration).

How can we be sure of this? Quite simply, this issue of Children Today presents the evidence. This issue of Chilren Today tells about families and children who are wearing a different set of clothes. This issue of Children Today presents evidence that families are discarding the cumbersome overcoats of winters past. These overcoats were restricting and not suitable for liberty, equality and community, for they were part of a tradition that wrongly taught that:

* Children with disabilities are burdens and can make no overall positive contributions;

* Families and children should have few expectations and should be "realistic" about their lives and grateful for only a few privileges and limited rights and opportunities;

* Families and children should expect to be included and accepted only by specialists and "their own kind;"

* Families and children should have few choices because they have few abilities, including the ability to choose;

* Families and children "are disabled" and inherently without strength, their disabilities being their chief attributes;

* Families and children with disabilities should accept second-class citizenship, for that is all they deserve or can earn.

There is other evidence, too, that families are wearing spring and summer-like, hopeful, optimistic clothes. It's all around us, and we can see it wherever we go--in every community in America, in the general stores and suburban malls, in rural and urban settings, in rich and poor communities, in black and white and yellow and brown neighborhoods, in the Capitol in Washington and the State Houses, in all the unexpected places where, in the past, children with disabilities were unwelcome and unusual. All you have to do is look.

You will see, too, that families and children with developmental disabilities are telling us something else about themselves. They are telling us that while they cannot choose what befalls them, they can choose their attitudes about life. They are also choosing to live by new values and new principles.

Several years ago, we decided to put into a few words what we ourselves had learned as the parents of a young man with two developmental disabilities. These few words also happen to be what we and our colleagues at Kansas University have discovered in our research on families with members with developmental disabilities.

The few words--the creed of the Beach Center at Kansas University, the spring and summer-like flowers that are harbingers of a different life--are POSITIVE CONTRIBUTIONS, GREAT EXPECTATIONS, FRIENDSHIPS, CHOICES, STRENGHTS, and FULL CITIZENSHIP.

The message of this issue of Children Today is that none of these flowers can bloom in the old world of winter, deprived of sunshine and warmth. Segregation is the equivalent of winter, denying the nurturing light and heat that are essential if new flowers are to bloom and new creeds are to be believed and lived out. Here is why, and what we can do to help these new flowers bloom.

Positive Contributions means, quite simply, that people with developmental disabilities and their families make positive contributions to each other, their communities and society. They cannot do so when they are segregated, for segregation denies them the possibilities for contributing. To achieve positive contributions:

* Each family's support plan, each child's education plan, each adolescent's transition plan, must identify at least one contribution that the person already makes and target more than the person might make;

* Families, professionals and the media should publicize these positive contributions (for example, at school, in community volunteer activities, at work, etc.);

* Families and people with disabilities need to keep focused on the contributions that they have made, especially when they are living during hard times, for the past in the promise of the future;

* All should insist on one-to-one relationships between those with disabilities and those without disabilities. Positive contributions are harder to see and believe when people meet group to group (Have you ever been able to "mainstream" a group on a permanent basis?);

* State legislatures need to pass family support laws to help families keep themselves intact so that they will benefit from each other's contributions;

* State regulations should require all individual plans to identify positive contributions;

* Researchers should stop aksing, "What's wrong with this family?" and start asking, "What good comes from the disability?" (After all, should families start asking, "Who are these researchers and why are they saying these horrible things about us?")

Great Expectations means that families and people with disabilities should dare to dream. They should resist being "realistis," for being realistic rarely makes an exceptional difference. Their dream should be the typical American dream: an education, a regular job for regular wages, a regular home, and a regular life, with support as wanted and needed throughout. To have great expectations:

* Success stories need to be told, as they are in this issue of Children Today;

* Families should aks professionals about their dreams and expectations for people with disabilities, even before any other conversation occurs. If there are differences in the expectations, there will be disagreements about techniques and interventions;

* Professionals should help families and people with disabilities highlight their abilities so all can see what they CAN DO and all can learn to have great expectations;

* Service systems that still require people with developmental disabilities to move through a "readiness model" (no progress toward the mainstream until you have achieved skills in a pre-mainstream setting) should jettison this approach and realize that they should teach, habilitate, and provide services in typical settings, with adaptations;

* State and federal policy needs to move far more aggressively toward deinstitutionalization of the state developmental disabilities centers;

* State and federal policy also has to be explicit and aggressive about another policy--defacilitation: getting away from the sheltered workshop, group home and "special" populations approaches.

FRIENDSHIPS means that the real "social security safety net" is not a federal or state program, but friendships. It means that government benefits are necessary but not sufficient. What will really protect and sustain our children? It is not the government program, however indispensable it is, but our family and friends and communities. To develop life-sustaining and life-enhancing friendships:

* Integration must occur in all infant-toddler programs, preschools, schools, junior colleges and four-year colleges and universities (including graduate schools);

* Students with and without disabilities need to have more than "peer tutoring" (although that is useful)--they need time and reasons to "hang out" together, to be givers and receivers (for example, a student with a disability can be a manager of a varsity team);

* Integration must occur in the work place;

* Families and professionals need to encourage family members and friends to become involved in all aspects of planning. (Just think how many people got their jobs through their family or a friend's "connections" and you will realize how useful "informatl supports" are.)

CHOICES means that families and people with developmental disabilities need to have more choices about their lives. It is by now abundantly clear that the "coping" or "successful" family or person is one who feels some control and mastery over life. That comes from having choices and the means--sometimes furnished through government programs, sometimes by family and friends--to carry out the choices.

To have choices:

* Educators need to start teaching decision-making skills to children in their early years and they need to continue teaching those skills throughout the school years, encouraging families to carry through on the instruction;

* Other professionals need to work on decision-making skills and choicemaking, negotiations, and problem-solving skills with adolescents, adults and families;

* Just as the new Individual Transition Plan (mandated by the 1990 amendments to the Education of the Handicapped Act) requires the student's preferences to be taken into account (how can that be dome unless decision-making skills are part of everyday school and home life?), so too should the families and professionals who conduct Individual Education Program meetings begin to include students to a far greater degree than they have in the past;

* Researchers need to develop more curricula on choice-making;

* "Consumer satisfaction" surveys should ask two questions: the usual one of "How satisfied are you with present services?", and the more important one of "What services do you want, when, where delivered, how provided, and by whom?"

STRENGHTS means that families, people with disabilities, providers, and researchers should stop focusing exclusively on what the person's needs are (the "pathology focus" or "fix-it" approach) and concentrate more on strengths. This new emphasis on strengths means that:

* Just as the Individual Family Support Plan determines the family's strengths, so too should other individualized plans build on the strengths of the child, adolescent and adult with a disability;

* State and local service providers should redesign all "I" forms (IFSPs, ITPs, IEPs, IHPs, etc.) so that they list first the person's strengths, then their choices, and then their needs;

* Researchers should study resiliency in people with disabilities and their families, not just their event-specific "coping" skills;

* State legislatures should enact "family support" laws. At the Beach Center, we have just completed a thorough policy analysis of family support and a model statute for state family support laws.

When our son Jay was born nearly 24 years ago at one of the nation's foremost research hospitals and began to receive services at one of the nation's leading developmental disabilities clinics, we were not told about POSITIVE CONTRIBUTIONS, GREAT EXPECTATIONS, FRIENDSHIPS, CHOICES, and STRENGHTS. It was not the fault of the people who provided services to him--they were just not moving into the new summer time.

Now, having lived in the winter of the traditional views and in the springtime and summer of the new, we say, "If we had only known then what we know now, we would have lived our lives differently." Since we have discovered these creeds, perhaps we can teach families, people with developmental disabilities, providers, researchers, and policy makers a new lesson.

Perhaps they will learn when we say (as the other authors in this magazine say), "Jay lives on his own, with support, in a house that he is paying for with competitive wages that he earns in regular employment with support, in a town where he spends most of his time hanging out with people who do not have disabilities, and where he is regarded by and large as a regular citizen."

Perhaps then they will know what we mean when we assert that FULL CITIZENSHIP comes from having a creed and working to make it come alive. Perhaps, reader, you will understand that you have to be part of the action. If you do not believe, you will never see that FULL CITIZENSHIP has been found in the seasons of spring and summer. Are you willing, able and acting to learn from spring and summer and to enjoy the coming winter?

Rud and Ann Turnball are the co-directors of the Beach Center on Families and Children at the University of Kansas in Lawrence, Kansas. The authors are the parents of a 23-year-old son with developmental disabilities.

COPYRIGHT 1991 U.S. Government Printing Office
COPYRIGHT 2004 Gale Group