Children, especially young children, are in the dependent position of having adults determine and act upon their perceived needs and interests. In the case of children with disabilities, parents and professionals may be involved in defining their needs and deciding how best to address them. Widespread implementation of community-based care and education of children with disabilities in the latter half of the 20^th century has created a situation in which both parents and professionals may make claims when determining and acting upon the therapeutic and educational needs of children with disabilities. Within the context of public programs, federal legislation gives parents rights to participate in determining the care that is provided through formal systems, such as special education (for school-age children) and early intervention (for infants and toddlers). This overlap between family and formal systems of care is a modern social phenomenon. Early in the 20^th century, there was no overlap between parents and professionals in the care of children with disabilities. Children were either placed in residential institutions (with no care from their families) or were kept at home (with no formal care from professionals), resulting in a divide in care for children with disabilities.

This paper examines how parental activists reduced this divide; how parents and professionals have used federally legislated rights to regulate parent-professional relationships; and how parental rights play out at the ground level, between individual parents and professionals in three Early Intervention (EI) programs in Massachusetts that serve infants and toddlers with developmental disabilities and delays. Finally, the paper critiques the use of rights to alter the structural power inequality that exists between parents of young children with disabilities and the professionals who work with them.

Three sources of data are used in this paper. First, secondary historical information is used to document the "divide" that once existed between family and formal systems of care for children with disabilities, and when and why the divide decreased late in the 20^th century. Second, the legislative analysis of parental rights uses verbatim transcripts of the Congressional hearings and reports and of the bills that created the Early Intervention Program in 1986 (the Education for All Handicapped Education Act Amendments (EHA)) and reauthorized the program in 1991 (Individuals with Disabilities Education Act (IDEA)). Five types of actors testified in these hearings: parents, professionals, parent/professional consortiums (representing national parental and professional organizations), academic researchers, and educators.

Third, the analysis of parental empowerment at the ground level relies upon fieldwork conducted in three EI programs. The Early Intervention (EI) program is a federally mandated, state-operated program that provides therapeutic services to children under the age of three who have developmental disabilities and delays. Within these federal and state systems of oversight and funding, the EI program is implemented by community-based EI programs, which are located in a variety of institutional settings (e.g., hospitals, community health programs, or as "stand-alone" programs in communities). EI programs provide a wide array of services, depending upon a child's needs, and those of his or her family. Some of the services may target the parents, such as parent support groups or family training. Most EI services, however, are therapeutic and focus on the child's development, such as speech/language therapy, physical therapy, occupational therapy, psychological services, etc. The three programs included in this study are all located in Massachusetts, serving children living in cities, suburbs, and rural areas.

Across these three programs, 31 families and 19 professionals participated in the study. Individual interviews were conducted with parents (just mothers in 27 of the families and both mothers and fathers in 4 families) and with professionals. Observations were made of home visits, during which the professionals worked with the children and the parents, imparting therapeutic care and knowledge. The three EI programs serve a diverse group of families, as EI is a "universal" program, which uses therapeutic (not income) criteria to determine eligibility. The children all had documented developmental disabilities or delays, and most had been diagnosed with a medical condition, including cerebral palsy, Down syndrome, Erb's play (a birth injury involving nerve damage), Pervasive Developmental Disorders (PDD), and hearing impairments. One-fifth of the families were low income, as indicated by receipt of Women with Infants and Children (WIC) benefits, while 40% had incomes of $40,000 or more. Almost all of the children (27) were Caucasian, with two African American, one Southeast Indian, and one Chinese American family in the sample. A majority of families were referred to EI through medical sources (e.g., physicians or neonatal intensive care units). The professionals represent the major disciplines in EI, including: two educators, four social workers, four occupational therapists, three physical therapists, three speech therapists, two nurses, and one psychologist.

Grounded theory provided the methodological framework for the analysis of data for this study (Glaser and Strauss 1967; Strauss 1987). The legislative information was coded to identify themes within and across the two waves of legislative activity in 1986 and 1991, resulting in the identification of two "models" of family participation in the EI program: a "family ecology" model and a "family empowerment" model. Empowerment was also identified as a key theme in the analysis of the fieldwork data.

Until the 1960s, parents faced a difficult choice: they could keep their children with disabilities at home and not receive formal services, or they could obtain services for them within residential institutions (Scheerenberger 1976). At the time, there was a "residential assumption" (Skarnulis 1979) that children needed to live in residential facilities, especially if they had mental retardation or were blind or deaf. Reformers began to create large institutions for people with mental retardation in the 1850s, and a century later, services were still available only in those settings. Physicians, teachers, social workers, and psychologists often advised parents that giving their children to state or private agencies for care was their best option, and often at an early age (Skarnulis 1979; Trent 1994). In 1932, the federal Office of Education published a pamphlet that advocated institutional placement for this reason:

"'Let's wait awhile' is frequently heard from the lips of a parent who realizes that the little deaf or blind child needs the education which the State School provides, but who is reluctant to part with him so young. He is still a baby—only six years old. In four or five years he will be better able to take care of himself and the separation may not be so hard. But remember too, that in four or five years he will have lost the opportunity for the early training which is so important. The younger the child the easier it is for him to adapt himself to new ways of learning. Unless you can in your own home provide that which he needs in the preparatory stages of the work, then permit the State School to teach him as early as it will admit him" (Martens 1932, cited in Safford and Safford 1996:297).

Parents who kept their children at home were told that they were depriving them of therapeutic and educational services that they would receive in institutions.

The first wave of parent advocacy, organized by the parents of children with physical, sensory, and developmental disabilities (Powers 1996), began to narrow this gap between public and private care for children with disabilities. Parent groups at first provided charity to children with disabilities. For example, in 1935, the Child's Benevolent League (CBL) of Washington collected toys, found merchants who would donate to the state school, and "adopted" children at the school (sending them clothes, gifts, Christmas boxes, and "cheerful letters") (Clark 1937, cited in Jones and Barnes 1987). After World War II, parent organizations began to form at a brisk pace. Most of the early parent groups were organized around specific disabilities (e.g., mental retardation, cerebral palsy, and autism) (Dybwad 1983). For example,

"[In 1948,] Anne Greenberg placed an ad in the New York Post: "To the mothers of retarded children: Are you interested in forming a cooperative nursery school for your children?" A similar ad had been placed in the Bergen Evening Record by a mother in New Jersey. In each case, the advertisement led to the establishment of a local group which developed a range of programs" (Dybwad 1990a:27).

The parents of children with mental retardation organized early, and their groups grew quickly during the 1940s and 1950s, becoming a dominant voice on behalf of children with disabilities. Mead and Brown (1966) identify four factors as responsible for the emergence of the American Association for Retarded Citizens (now known as The Arc) and other groups of parents of children with mental retardation: a lack of community services for children with disabilities; popular concern with the conditions in the state institutions; parents having a platform at the White House Conference on Children and Youth; and indications that the federal government might provide funding for mental retardation programs. Also, famous parents of children with mental retardation including Dale Evans Rogers and Pearl S. Buck wrote about their parenting experiences, making the public more aware of mental retardation (Trent 1994). Parent groups stressed that mental retardation could happen in any family (Dybwad 1983), striving to normalize and destigmatize their experiences. The members of these organizations were mainly middle- and upper-class parents (Dybwad 1990; 1990b, cited in Trent 1994), and the children of middle- and upper-class parents became the focus of professionals (Perry 1966).

While parent organizations began locally, over time they began to organize at the national and international levels (Dybwad 1983). Beginning in the 1960s, parent organizations began to collaborate across disabilities. Members of large and influential groups, such as The Arc, the Autism Society of America, and United Cerebral Palsy began to coordinate their activities. Cross-disability groups such as the Federation for Children with Special Needs, The Association for Persons with Severe Handicaps, and Family Voices have helped the parents' movement grow (Cooley and Olson 1996).

As parents' groups grew and began to collaborate, the tone of the organizations' missions also changed. Early groups mainly organized telethons and fundraising drives to elicit pity and charity for children's institutions (Fleischer and Zames 2001), but in the 1950s through the 1970s, parents' organizations began to advocate for services and a voice in the programs that served their children (Pizzo 1990). They became "vehicles for rights advocacy" (Shapiro 1994:24), lobbying initially for additional schools, and later for community-based services. These parent groups were "the advance troops of a new consumer movement" (Boggs 1994:47). One result was that during the late 1950s, the Department of Education sponsored a research program to investigate approaches to schooling children with disabilities (Dybwad 1964) and subsequently began to provide some federal funds for community schooling.

In the 1960s and 1970s, the parents' movement strove to obtain community-based services for children with disabilities, so that parents would no longer have to choose between keeping their children and securing services for them. President Kennedy was elected and appointed the President's Panel on Mental Retardation in 1962, which attempted to identify needs across the life course, including community services. Borrowing tactics and language from the black civil rights movement, parents used the courts and legislation to gain civil rights to services for their children (Pizzo 1987). The deinstitutionalization movement began to pick up steam, and contributed to the contemporary commitment to community services (Scheerenberger 1976).

Many of the battles that parents fought on behalf of their children during the 1960s and 1970s centered on public education for children with disabilities. Court cases such as Pennsylvania Association for Retarded Children (PARC) v. Pennsylvania, and Mills v. Board of Education and parents' federal lobbying resulted in Congress creating the special education program at the national level in 1975, through the Education of All Handicapped Act (EHA), which is now called the Individuals with Disabilities Education Act (IDEA). This legislation guaranteed that children with disabilities would receive "a free appropriate public education which emphasizes special education and related services designed to meet their unique needs...." It "was the disability movement's equivalent of Brown v. Board of Education" (Shapiro 1994:166) and gave children with disabilities the right to receive an education in their communities.

This first wave of disability activism (by parents) was followed by two later waves of disability activism. The second wave was comprised of adults with disabilities. (For more on the second wave, see Charlton (1998); Fleischer and Zames (2001); Scotch (1984); and Shapiro (1993)). The third wave consists of collaboration between adult, parent, and professional constituencies (Powers 1996). Having gained community-based services, parents began in the 1970s to work on changing their relationships with professionals. Parents and professionals recognized their mutual interests during this time: parents wanted their children to receive services, professionals were providing those services, and some professionals began to work with parents to advocate jointly on behalf of children with disabilities (Shapiro 1994). In the 1980s, collaboration between parents and professionals who provided services to children with disabilities picked up steam, resulting in, among other gains, the passage of the legislation that created the Early Intervention (EI) program. The EI program extended the scope of social policy for children with disabilities in two key ways: it brought the age of intervention down to birth; and it included not only children, but also children's families as units of intervention.

Two "faces" of family-centered care emerged from the legislative activity in 1986 (when Congress created the EI program) and 1991 (when Congress reauthorized the program). In the first round of legislative activity, which culminated in the creation of the EI program, there was a convergence of interests between parents and professionals, out of which a "family ecology" model of parental participation emerged. In contrast, parents were quite vocal in protesting the interventionist nature of the family ecology model in the 1991 hearings, instead asking for "family empowerment." Parents' quest for empowerment was only partly successful, resulting in significant changes in discourse, but few changes in the distribution of structural power between parents and professionals.

During the Congressional hearings that preceded the passage of the Education for all Handicapped Amendments (EHA) in 1986, parents and professionals claimed that early childhood disability was a substantial social problem, and that the Early Intervention was part of its solution. As a program for infants and toddlers with developmental disabilities or delays, EI addressed disability early in children's lives, with posited future benefits for the children themselves, their families, and U.S. society as a whole. In the Congressional hearings, parents and professionals used family-centered frames "to locate, perceive, identify, and label" (Goffman 1974: 21) childhood disability as a family issue, successfully expanding the domain (Best 1990; Best 1995; Loseke 1999) of childhood disability as a "social problem" to include families as central to its solution. When framing childhood disability as a family, not individual, issue, participants in the 1986 hearings made moral claims (Loseke 1999), calling up "family values" in support of making EI family-centered.

Families were framed as children's "natural ecologies," creating the federal family-centered mandate that continues to inform the therapeutic care of young children with disabilities to this day. Parent organizations, professional organizations, parent/professional consortiums, and researchers uniformly voiced the "family ecology" claim. Under family-centered care in EI, both parents and professionals were given responsibility for the therapeutic care of children with disabilities. There was remarkable frame alignment (Snow et al. 1986) between parents and professionals regarding these claims of family values—parents' and professionals' claims and "rhetorical frames" (Rein and SchØn 1996) were almost identical. There were no counter arguments to these family-centered claims in the Congressional testimony—the only opposition in the hearings was to the creation of the EI program in overall, particularly regarding costs and appropriateness of EI services, not regarding the family-centered nature of the program.

Parents wanted professionals to recognize that they played a key role in caring for their children. The "family ecology" frame offered them that recognition. Martha Ziegler, Executive Director of the Federation for Children with Special Needs, articulated the family ecology claim during the House hearings, relating that,

"The work of children 5 to 21 is learning, and those of 3 to 5 is getting ready to learn. They do this in the mainstream of school and preschool. The work of children birth to 3 is development, and the mainstream is the family" (U.S. House 1986:171).

On the professional side, professionals thought that they could be most effective if they worked through families. Professionals' family-centered claims were grounded in ecological theories of child development (c.f. Bronfenbrenner 1979; Belsky 1981), in which the family is viewed as the primary environment influencing infants' and toddlers' development. At the time of the EHA hearings, the ecological theory of early childhood development was well accepted (Jacobs and Weiss 1988), and Congress deliberately used this theory to justify making the program family-centered (Silverstein 1988).

From this ecological perspective, families were not simply "natural" environments for young children. Families were social environments that could be improved through public intervention. According to ecological theory (Bronfenbrenner 1979), there are social institutions outside of the family which influence both the family and the child, including public programs and services. These outside systems affect children's development directly through child-level services, but also indirectly, through services to their families. Implementing this ecological theory meant providing services "through" families. Just as families in general at the time were said to be "faced with stresses unique to contemporary society" (Kagan and Shelley 1987:5), professionals saw families of children with disabilities as needing their support.

Parents, professionals, and academic researchers all claimed that families of children with disabilities face unique "needs" as a result of their children's disabilities, using that claim to justify the creation of the EI program. Michael Guralnick, an academic researcher then at Ohio State University, emphasized the importance of addressing these family needs:

"...it is important to note that complications extend beyond the individual child, as the stress on families and the risks to the family unit must also be considered. Early intervention in the form of counseling, anticipatory guidance from health professionals, and the provision of support groups may be able to prevent the inevitable difficulties from reaching critical stages. Failure to do so not only jeopardizes the well-being of the handicapped child, but of all members of the family" (U.S. Senate 1986:37).

Under this rubric, the family becomes a beneficiary of EI services, and family-based services are expected to result indirectly in improved child development outcomes.

Parental rights were the key mechanism through which Congress legislated this vision of family centered-care. Borrowing a rights-based approach from the special education program, EI's "older sister," Congress gave parents two initial sets of procedural rights. The first set of rights—based entirely on parents' rights in special education—provides "procedural safeguards" to parents and specify the process that should be used to make decisions. Under those provisions, parents had the right to: confidentiality; access to records; communication of procedures; written notice of changes; make complaints; and service provision during disputes (Public Law 99-457, Section 680). These rights emphasize informing parents and giving them a role in deciding which services their children will receive.

The second set of rights provides the foundation for the ecological version of family-centered care, by defining the family as the primary service recipient in a program for children (Krauss 1990). Under these rights, parents had to receive: a multidisciplinary assessment of unique needs and the identification of services to meet those needs; a written individualized family service plan developed by a multidisciplinary team, including the parent or guardian; periodic review; promptness after assessment; and content of plan (including statements of the child's condition, the family's strengths and needs, child and family outcomes, and services to be provided) (P.L. 99-457, Sec. 677).

By defining the family as a unit of intervention and not specifying how families should participate in making decisions, the second set of rights made families not simply beneficiaries of services, but targets of public, professional intervention. In medical terms, the family was seen as "a unit needing treatment if it is to become an effective resource" (Moroney 1980:127). Over time, vocal and organized parents began to chafe against being targets of intervention, and to demand rights to be more active participants in their children's care. These activist parents still wanted a "family focus" in services, but disagreed with the tenor and substance of the link between familial and formal systems of care. Specifically, they did not want to be the "patient" or the "problem." Featherstone (1980), a mother of a child with a disability, explains this parental position:

All the advice, the dependence on expert opinion and approval, the vulnerability of people in trouble—all this can infantilize parents and restrict the freedom to solve problems and make choices in their own way. Medicine has done a great deal for the disabled, but a medical model—any model based on hierarchies of clients and expert professionals—has serious limitations. These limitations matter most at the points where problems become human, not technical (P. 113).

Parents started out in the 1986 hearings wanting professional acknowledgement of the key role that they played in their children's lives and development. When parents received that acknowledgement in the form of being the targets of intervention, they attempted to reframe family-centered care as empowerment. During the 1991 hearings that reauthorized the EI program, parents requested power, respect from professionals, and a more positive perception of their families, with less blame and pathologizing.

In 1991, parents expressed dissatisfaction with professional dominance in the treatment of childhood disability. Parents wanted "ownership" (Gusfield 1981) over their participation in the program, especially the power to define their needs and their children's needs and how those needs would be met. On the surface, parents' demands during the 1991 hearings appear to be entirely rhetorical, as they largely focused on changes in legislative language. Yet these requests were also attempts to change the structural power imbalance that existed between parents and professionals.

Parents requested two specific changes in legislative language regarding families: they asked that "case management" be changed to "service coordination," and families' "strengths and needs" be changed to "concerns, priorities, and resources." The EHA required EI programs to assess families "strengths and needs." That wording was meant to acknowledge that families had strengths, not just needs. Parents, however, felt that it did not go far enough. In response to these concerns, parents and professionals asked Congress to remove the word "need" altogether. This wording change may seem minor, but it indicates the power that comes with being able to name problems and people. Parents disliked the implicit judgment involved when professionals evaluated their "needs," as Jeanette Behr (a mother) indicated:

"Also, under the IFSP [Individual Family Service Plan], which I think Diane explained so well, we have tried to get away from evaluating a family, and I don't think a system has a right to come in and evaluate a family, and I think most of the professionals in this room would agree that that would be extremely intimidating" (U.S. Senate 1991:30).

Likewise, the Consortium for Citizens with Disabilities indicated that:

"Unfortunately, language in the statute has been interpreted by some professionals in such a way as to allow them to approach families from a deficit/dysfunctional perspective, rather than a competency perspective, and does not clearly indicate that the family is responsible for directing the services and supports which they feel would be of greatest benefit" (U.S. Senate 1991:125).

Parents were contesting professionals' prerogatives to interpret and act on their families' needs and to have their needs translated by "expert needs discourses" into "objects of state intervention" (Fraser 1989:173).

This issue of being defined and treated as "cases" underscored parents' second requested language change: to re-label "case management" as "service coordination." This requested change was voiced by academics, parent organizations, and parent/professional consortiums that participated in the hearings. The Consortium for Citizens with Disabilities (CCD) stated that "Families consistently tell us that they do not want to be referred to as 'cases' nor do they want their lives 'managed'" (U.S. Senate 1991: 123). It is important to note that there seems to have been unanimous agreement regarding these two requested changes in terminology, across parents and professionals. In fact, much of the written and spoken Congressional testimony regarding these language changes was exactly the same across organizations, indicating a coordinated effort to deliver a consistent message to Congress and to dictate the wording Congress used in the IDEA.

As a result of this unanimous pressure for these changes in rhetoric, Congress incorporated these language changes into the IDEA. Rather than mere rhetoric, these changes were a turning point in the official discourse about family-centered services in the EI program. As Fraser notes, "In oppositional discourses, needs talk is a moment in the self-constitution of new collective agents or social movements" (1989:171). Changes in language are not an unusual aspect of defining a social problem as a public issue. And, "When terminologies change, when new terms are invented, or existing terms are given new meanings, these actions signal that something important has happened to the career or history of a social problem" (Spector and Kitsuse 1977:8). Parents were successful in obtaining changes in language, effectively changing the "rhetorical frame" (Rein and SchØn 1996) of family-centered care from "family ecology" to "family empowerment."

Less consensus and coordination was evident, however, regarding parents' bid for structural power during the 1991 hearings, when they attempted to claim the role of "service coordinator" for themselves. This bid to claim the position of "service coordinator" is not unique to EI; it is similar to other "contests" in the disability rights movement over the past 25 years, in which people with disabilities strove to redefine themselves as consumers, rather than recipients, of services. Some parents began to call for "equality" in their interactions with professionals, and the bid to become service coordinators was part of that call. Gayle Underdown, the mother of a son with Down syndrome, testified that,

"...it is imperative for families to be empowered in leadership roles in order to continually shape policies focused on quality, family-friendly services. Parents should also be in such higher positions as service coordinator and resource referral. As a rainbow's colors are combined and blends into one another, so should our service system so that all parts are of equal importance" (U.S. House 1991: 22).

The service coordination demand was not just about rhetoric but was also about the structural position through which definitions of need could be made. Despite the nearly complete unity on the legislative language changes, schisms appeared in the support for allowing parents to be service coordinators.

The Division for Early Childhood (DEC) called for parents to be able to reject service coordination as a service and to serve as co-service coordinators (U.S. Senate 1991: 102). Brian McNulty, in his statement on behalf of the National Association of State Directors of Special Education, advocated that trained family members being allowed to be service coordinators for other families (U.S. House 1991: 259). The Consortium for Citizens with Disabilities (CCD), the National Congress of Native Americans, and Gayle Underdown (an individual parent) all called for Congress to allow parents to be their own families' service coordinator if they chose. In written testimony to Congress, both the CCD and the National Congress of American Indians called for parents to be paid for the work as service coordinators. None of the other actors in the House and Senate hearings, however, called for parents to be paid for this position.

Both the House and Senate addressed these issues regarding service coordination in the reports that accompanied their draft versions of the IDEA. Each report stated that parents may be trained to become service coordinators for other families. The House report stated that "Parents may want to assume certain responsibilities while retaining a service coordinator provided by the system to provide other aspects of the service" (House Report 102-198: 19). The Senate version was slightly more pro-family, stating that "...in some circumstances, a parent may elect to serve in the capacity of "service coordinator" for the purposes of [EI] and elect not to use the "service coordination" services available under [EI]" (Senate report 102-84: 26). Both reports were careful not to mandate that parents should be service coordinators or to require states to pay parents to be service coordinators for their children. Instead, they allowed states to have the discretion to decide that parents could be service coordinators and to pay them for their work in that role. Congress effectively left professionals' structural power intact by maintaining public control over decision-making in the EI program. EI staff maintained their legal authority (Weber 1978)—that is, "belief in the legality of enacted rules and the right of those elevated to authority under such rules to issue commands" (P. 215).

However, Congress did give parents some new tools for making their voices heard within the EI program, in the form of three additional rights. One of these rights specified a change in the manner in which family assessments would be performed: not only were family concerns to be reflected in the program, but the families themselves were also allowed to specify which needs were relevant to the program and therefore subject to intervention, and which needs were their private concerns. The IDEA also granted parents the right to informed parental consent and the right to decline EI services without jeopardizing other services. For example, a mother could decide not to participate in a parent support group without jeopardizing her child's physical therapy services. These rights offered parents greater ability to determine which services would and would not be provided to their children and themselves.

Parents' attempts to reframe family-centered care as empowerment were partially successful, resulting in changes to both rights and rhetoric. This approach demonstrates considerable faith that rights and rhetoric could reduce the structural inequality that existed in parent-professional relationships within EI. Yet these rights-based mechanisms to altering power depend entirely upon parents ability to pick up those rights and use them.

This leads us to consider what the formal, legislative discourse has to do with the lived experiences of parents of children in the EI program. To what extent do parents in the EI program actually use their hard-won rights? Very little, it seems. Fieldwork findings from three EI programs indicate that only 12 of the 31 parents interviewed could remember any of their rights in the program. Most parents remembered being given a pamphlet upon entry, which was stored with their child's records, and they often offered to go dig it out. Of these 12 parents who remembered any of their rights, 8 remembered only one or two rights, usually the right to confidentiality and the voluntary nature of the program.

Only 4 of the 31 parents were aware of a wider range of rights, including the right to participate in making decisions about the care that the program provided to their children. These four parents used their rights as needed, sometimes actively, as was the case for Suzanne, who said:

"I consider myself the leader of the team. And not just because I feel that way, but because his pediatrician and [therapist] and other people have said, "You're in charge." And that's kind of a tremendous responsibility...So, yeah, I think I am the team leader. I don't think a lot of people feel that way. I think a lot of people want someone to say, "Okay, we're going to do this, that, and the other thing." And it did take me a little while to get there, but that's what they're training you to do. Supposedly EI is supposed to train you to sort of take on that role. And I think they've done that."

Likewise, Greg explained that he and his wife Gemma had participated in all of the decisions about his daughter's care:

"If you ever looked at Jamie's medical records you'll see parents are very proactive all over her medical records. Which we actually think is code for parents are a pain in the ass. But, so we never had any concern actually about who was in control of Jamie's services."

This is not to say that Greg and Gemma felt that they did not need the staff's expertise. They still relied upon the staff's clinical assessments of their daughter's development and their suggestions about how to address their daughter's care. It was after the staff made those recommendations that Greg saw their decision-making role begin.

The four families who were aware of their rights to participate had three characteristics in common. The parents all had bachelor's degrees, and parents in two of the four families had advanced degrees. All four families had children with fairly significant disabilities that would result in life-long impacts on their children's health and functioning. And they all worked with professionals who knew that the children and families would have to work with service systems for the rest of their children's lives—these professionals strove to socialize the parents to become advocates on behalf of their children. In fact, one of the challenges these professionals faced in attempting to empower parents was to convince parents to voice their concerns and disagree with professionals when necessary, as Leah (a social worker) indicated,

"It's interesting too—and I'm digressing—but I have also heard from a lot of the women, mostly mothers, kind of like, you know, "Is it okay to be a bitch?" You know what I mean? That comes under the heading of, you know, parent empowerment....So, okay, so maybe the staff here is going to say, "Well, that one's bitchy," you know what I mean? But sometimes you just have to be a little bitchy, because it's a big system. So helping parents be okay with that."

Multiple barriers existed to parents' participation in making decisions about their children's care. These barriers resulted from both professional and parental characteristics, and sometimes a mixture of both.

Five main barriers to parents' use of rights were identified through interviews with parents and professionals: professional socialization, professional power, parent-professional intimacy, parents' limited awareness of rights, and parental/family constraints on parents' ability to use rights.

Professional Socialization.The current family empowerment discourse puts considerable responsibility for implementation on professionals' shoulders. Professionals explained that their formal training did not prepare them to practice family-centered care—in many instances, their education contradicted family-centered care by focusing on the provision of child-centered services. Staff learned family-centered skills through practice, if at all, as Edna, a veteran therapist, indicated:

"E: But empowerment can really be one of the hardest parts of the job. You know where I see that really affected a lot is the new people coming in because the students that are coming in are intimidated.

V: By the parents?

E: Yeah, I think they're intimated by their feelings of their lack of their own knowledge or on the other head they come on too strong because "I'm the professional and I know everything because I just graduated from school."....They always had to be the one with all the answers, or intimidated to the point where they just went in and did their work and didn't engage with the parent very much, they just played with the child because that was most comfortable with them. So their engagement with the parent, they weren't empowering the parent at all, they were treating."

Traditionally, early intervention practitioners had limited training regarding how to work with families (Dunst, Trivette and Deal 1988). Professionals were trained to be "helpers, givers, and assessors" (Pizzo 1990:675), and that training does not help them negotiate collaborative roles with parents. A recent study by Harbin (1998) suggests that little change has occurred in this area of professional training: she found that EI staff were often reluctant to deal with family-oriented services because they had inadequate training in that area and lacked knowledge about the resources that might meet family needs.

Professional Power. Professional power is an important structural constraint on parental empowerment: even when parents are aware of their rights, they still do not have control over the resources held by professionals. This fundamental, structural power imbalance between parents and professionals is not altered significantly by the rights that are granted through the IDEA. Back in the 1960s and 1970s, some sociologists predicted a decline in professional power (c.f. Haug 1975; Haug and Sussman 1969), but this decline does not seem to have occurred within the EI program. The unsuccessful bid that parent activists made in Congress in 1991 to make parents "co-service coordinators" was aimed at rectifying this imbalance. Although individual professionals may strive to empower the parents with whom they work, the structure of power within the program works against parental empowerment as a system-wide enterprise.

There is a paradox inherent in EI professionals' attempts to empower parents within the program. Under the empowerment version of family-centered care, EI professionals are asked to share their power with parents. Handler (1996) refers to this form of empowerment as "empowerment by invitation." Professionals are expected to create equality in a situation in which people are unequal in terms of power and resources. In the EI context, professionals hold both legal authority over services and clinical authority by virtue of their medical and clinical knowledge regarding childhood disability. Pointing out this tension, Bertha, a therapist, said, "But we are also partly the services so that where there's sort of, I don't want to say tension, but [policymakers] are asking [providers] within the service delivery system to empower [parents] about their services." Professionals in a formal service delivery system are expected to subvert their own authority, empowering parents to take control.

Parent-Professional Intimacy. One of the dimensions of the EI program that many parents valued most was their intimate, trusting, "fictive kin" (Stack 1974) relationships with individual staff members, which developed over time. Mothers sometimes described professionals as "like family," or as "friends," as Anna did:

"...on a professional basis they've been very, very good. They've gone beyond that where they're friends. Like I said, they're like family now. We'd be lost without them....We don't just sit and talk about Ricky. We talk—it's like the whole family thing. She knows what's going on with the kids and I know what's going on with her family, so it's like we're old friends....I told her she's like family to us now...She's been great. I just love her. Ricky loves her."

Other studies have also found that parents look to EI professionals as an important source of emotional support and friendship (Summers et al. 1990), sometimes describing EI professionals as "more like a friend than a professional" (Harbin 1998: 31).

This intimacy can be a significant barrier to empowerment within EI. Parents often do not see professionals as "other," in the way that they were portrayed in the Congressional hearings, but rather as allies in helping their children. Trisha, a mother whose son was in EI, indicated that she felt that focusing on formal rights indicated mistrust in the staff, saying,

"Oh, Susan gave me a whole load of paperwork on that, I just couldn't fancy it. I'd said, "Yeah, thanks very much." She did explain everything to me. And it was like, "We're not that kind of person," you know, whatever she said, we trust her. I don't think I even read over, I put it in the files and said, "That's fine."

Under these circumstances, parents may not want to jeopardize a valued personal relationship by taking on a rights-based, consumerist stance towards professionals.

Parents' Limited Awareness of Rights. The program stresses professionals' provision of clinical knowledge—staff provide and reinforce that knowledge during the regular home visits ([author] in press). Professionals' provision of legal knowledge is far spottier. Staff "read parents their rights" at entry, but the timing of that information is problematic—this is the same time that the staff assess the child and family and describe the program. Parents are emotionally and intellectually overwhelmed then, so it is not surprising that they do not retain much information about their rights. For example, Naomi, a mother, said, "I'm sure they must have shown me. I signed things, I looked at all sorts of things. I just can't remember, but I'm sure they must have shown me all sorts of things about my rights." According to many parents, this limited legal knowledge was sufficient—the programs were responsive to their concerns, so they did not need to know more.

Parental/Family Constraints. There is also variation in parents' ability to participate in making decisions about their children's therapeutic care. This variation may be due to parental illness or disability, parental employment, or other family concerns (including other children's needs, and poverty). In one case, one mother reached out to another mother whom EI professionals recognized as having cognitive limitations, saying, "I know another little girl who's got significant cognitive issues and I think her mom and dad have some cognitive issues. So they don't necessarily themselves have the resources to be advocates and I also don't think that they really feel like their daughter needs as much as maybe she's going to need." More typically, parents face constraints on the amount of time and effort that they can dedicate to participating in making decisions about, and providing, therapeutic care to their children (Brotherson & Goldstein 1992; [author] in press). These constraints call into question the appropriateness of relying upon parental rights as a mechanism for reallocating structural power from professionals to parents.

Rights play a strong part in American politics (Stone 1988; Barber 1991). They are a "way of governing relationships and coordinating individual behavior to achieve collective purposes" (Stone 1988:266). In the 1960s and 1970s, social problems were increasingly addressed through legal means as clients of social programs were given legal rights that limited programs' discretion (Tweedie 1987). Clients sought rights because they wanted a voice, wanted to protect their interests, and to call for communication and attention to individual dignity (Minow 1990). Like many other groups in U.S. society at the time, parents of children with disabilities sought rights as solutions to their problems with social services. Parents first sought civil rights for their children, in the form of entitlements to community-based services, and later sought rights as a mechanism to regulating their relationships with professionals who provided those services.

Rights are often used as a part of a larger collective strategy for social change. Schneider (1986) discusses a dialectical relationship between rights and political struggle, where political analysis gives rise to rights, which then give rise to additional political analysis. In the case of the EI program, political analysis gave rise to the creation of the Early Intervention program and to parental rights in 1986, and those rights in turn gave rise to additional analysis and requests for social change during the reauthorization of the EI program in 1991. However, unlike other movements where a "rights consciousness" has been created (c.f. McCann 1994), few parents in EI are aware that they have rights regarding participation. The relatively quick turnover of families within EI limits the degree to which such a consciousness can be developed: families stay in the program for a maximum of three years, and many participate in the program for two years or less.

Some legal scholars have argued that rights are a poor mechanism for managing relationships and may even have a negative impact, corrupting the trust that exists between officials and their clients (Tweedie 1989). By giving clients rights, we run the risk of encouraging clients to challenge officials, creating conflict where none existed before. But this argument begs a question: to what extent does that trust exist for both parties? Minow suggests that legal language translates conflict that was already there and that "[t]he language of rights may give voice to what would have been silence, but not consensus" (1990:292). Engel's findings regarding special education committees (1990) suggest that parents turn to rights-based approaches because they want those tools to bolster them in their interactions with professionals. Special education, however, was born out of litigation against public education. Parental rights in special education addressed the demands of aggrieved activist parents who fought to have their children served in public schools.

Designed as an extension of the special education program, the EI program inherited its rights-based approach from special education. Apparently, those rights are very much in the background of most parents' experiences in EI. Much of the professionals' efforts working with children and parents is spent transmitting and reinforcing clinical knowledge, so that parents can work with their children ([author] in press). It is not until children begin to transition out of EI and into special education, that legal knowledge is brought to the forefront. At least in part, the relative lack of emphasis on rights within EI seems to be due to professionals' perception that parents do not need their rights in EI as much as they do in special education. Professionals portrayed special education as a colder, tougher, bigger world, one in which parents will have to fight for their children. EI was portrayed as warm and more responsive to parents' requests. Overall, that perception was held by parents and staff alike in among the participants in this study. In fact, parents' comfort levels in EI could sometimes make it difficult for staff to prepare parents for special education. Yet even though there seems to be some truth in the generalizations about EI being comfortable and special education being more challenging for parents, it is still important to note that EI staff stress the importance of legal knowledge outside of EI, but not within it.

It is easy to point our fingers at individual parents and professionals and say that they lack knowledge, skills, or capacity to implement the parental right provisions in the federal legislation. For example, McBride et al. (1993), in their analysis of the implementation of family-centered services in EI, "suggest that the professionals in this study were not strongly committed to or knowledgeable about help-giving that places emphasis on building the capacity of families" (P. 428). When there are widespread issues regarding the implementation of parental rights and we find structural constraints on their use, individual-level explanations are not sufficient ([author], in press). Bogdan et al. (1974) point out that when those who construct the policies and those who implement them are two very different groups, there can be a poor match between the "change agent" (in this case, EI staff) and the setting. Likewise, the older, experienced, activist parents who acted as change agents during the Congressional hearings are very different from the younger parents who enter the EI program now, when their children are infants and toddlers. There is a developmental aspect to parents' ability to become empowered and advocate for their children, which has not been acknowledged in the rhetoric around parental participation in EI. Parents in the program have very young children (under the age of three), and may need time to understand their children's conditions and the implications for their children and family before taking action.

Mwaler (1993) asks if we create an advocacy expectation of parents of children with disabilities that many parents cannot or do not want to fulfill:

"It seems to us that to create positive change in the lives of individual children and youth, we just empower those most concerned about their welfare—their parents—to make the changes happen. But we know that many parents cannot do so and many parents will not do so, for good reasons. We know that many parents will try to do so, but the end result often will be anti-normalizing, harmful to parents and families, and therefore the opposite of what we intended. So we continue on as before, helping to create a few "super parents" and pretending that it is both possible and desirable for other parents to emulate them" (Pp. 110-111).

This advocacy expectation puts the burden of change on parents, who do not control the distribution of power, nor the institutional practices that reify it.

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