History of Supporting Families
Supporting families means actively carrying out a comprehensive and coordinated set of strategies that are designed to ensure families with a member with intellectual/developmental disabilities have access to person- and family-centered resources, supports, services and other assistance.
The Person in the Context of the Family
Families are the core unit in our society, serving as a source of support for all its members. For people with intellectual and developmental disabilities (I/DD) the role of family is unique, and often central in the support and care provided across the lifespan. In not-so-recent history, the common practice of professionals in the medical field when a person with a disability was born was to suggest to their family they be institutionalized. People with disabilities were sent to live in institutions, separating entire generations from their families and the communities in which they were born, because people were afraid of the stigma of disability.
It is important to understand how far the disability field has come. Systems began with an institutional focus; however, over the past 30-40 years have become more person-centered. Today individuals with I/DD and their families embrace the idea that people with disabilities have skills, dreams, and feelings like everyone else and belong with their families. As principles of integration and inclusion are realized, a new generation of youth with disabilities are growing up in classrooms with their peers, going to college, getting married, and raising families of their own.
Embracing this shift in paradigm means thinking differently about what it means to support individuals with disabilities and their families. Our field is constantly growing and changing as we have been working hard for many years to steer our system away from an institutional focus to become a more person-centered system. As this evolution has taken place, the concept of family has been lost in many conversations about policy and practices.
Family members play key roles in identifying and securing opportunities for their family members to participate within their community in meaningful ways and ensuring access to self-determined lives. Parents and other family members of people with I/DD often provide medical, behavioral, financial, and other daily supports beyond what most families provide. Yet, the vital role of families is not fully recognized and supported in disability policy and practice.
Today, there are more than 4.7 million American citizens with an intellectual or developmental disability. Most, 75%, of these individuals live in their communities without any formal disability services. They rely on their families for varying levels of support to have the lives they want to have. Of the 25% that are receiving services, over half live with their families, and in some state, that number is as high as 80%.
All individuals – no matter where they live- live within the context of their family. As the system has evolved, we have tried to figure out strategies to support people with disabilities. As we have done that, we have made programs and services that enhance individuals’ abilities. However, we failed to think about what that did to individuals. In many instances, it actually cut them off from their family and community. With the best of intentions, the service system created a barrier to family and community.
The origin of the family support movement in the disability field is rooted in the United States larger societal context and events of the 1950s. As the war was ending, the country began to prosper. Women were working outside of the home, families were buying homes, medicine was improving and the economy started to boom. At the same time, the civil rights movement was starting where citizens were demanding equal rights and standards across the country. These political, economic and societal factors set the stage for what is recognized as the family support movement.
The larger social service family support movement began with the general social services movement in the 1960s, with self-help and grassroots efforts advocating for the development of community-based programs and supports to strengthen family functioning (Dunst, Johanson, Trivette, & Hamby 1991; Weissbourd, 1987; Weissbourd & Kagan, 1989; Zigler & Black, 1989). This movement focused on families in particular social or economic categories; such as poverty, joblessness, poor health, or other factors (Kagan & Weissbourd, 1994). The family support movement evolved to adjust to the changing composition and needs of families.
During this same time, the parent movement in the disability field was gaining strength and momentum. Parents organized to support each other and to speak out for their sons and daughters with disabilities (Braddock, 2002). Families strongly supported the idea that their child was not broken and did not need to be removed from their home to be fixed 23 (Bazyk, 1989; Cournoyer, 1991; Dunst et al., 1988; Turnbull & Turnbull, 1990). These parent groups were the first to bring disability issues of segregation, lack of education and training, and lack of support services to legislators, educators and the public (Goode, 1999). The parents highlighted the need to create a system of support that would enable their sons and daughters to go to school and receive the services necessary to continue living as a family.
This momentum created the first recognized disability family support movement. Families began identifying and campaigning for the development of programs that would support their child within community schools and the disability service system resulting in considerable progress in public policy for individuals with disabilities (Silverstein, 2000). These included the passage of Title XIX of the Social Security Act (Medicaid) which funded intermediate care facilities as opposed to funding only institutions; the ruling in the Wyatt v. Stickney case that found that individuals with disabilities had a constitutional right to treatment; passage of Section 504 of the Rehabilitation Act which protected individuals with disabilities against discrimination; and the landmark passage of the Education of All Handicapped Children Act (now known as IDEA). Also, during this time the Developmental Disabilities Services and Facilities Construction Amendments of 1970, P.L. 517 was passed, the first congressional effort to address the needs of a group of individuals with disabilities designated as developmentally disabled. This Act would later become the Developmental Disabilities Act (DD Act). These new policies laid the foundation allowing parents to care for their child at home and in their communities.
State governments establishing policies and programs to support and strengthen families of young children (Weiss, 1989) represent the next wave of the family support movement. States recognized that families needed assistance to support their child at home. In the early 1970’s Pennsylvania developed one of the earliest state-funded family support initiatives for children with intellectual disabilities. Over the next two decades, all other states and the District of Columbia fielded some type of family support for children, each offering different types of services and supports intended to do whatever it takes– to assure that children could grow up with their families (Daniels, Butz, Goodman, & Kregel , 2009). The following table summarizes the third wave of disability family support.
Federal legislation soon followed, representing a third wave of family support that refocused federal departments and initiatives on family-oriented and community based programs. Early intervention Special Education legislation (IDEA Part C) passed in 1986 that mandated states develop systems that utilize individual family service plans to integrate health, education and social service systems. Part C recognizes that the family is the most important constant in a child’s life and the family environment is the richest context for social, emotional, cognitive and physical developmental– (Hooper & Umansky, 2004, p. 92). IDEA reauthorization also indicated parents were to be viewed not only as recipients of services but as the accountability mechanism to monitor professionals as they implemented IDEA requirements (Turnbull & Turnbull, 2000; Turnbull, Turnbull, & Wheat, 1982). The same year the Developmental Disabilities Act mandated its funded entities to develop a 25 meaningful role for families in the provision of services and policies. This significant mandate is the impetus to the development of the Partners in Policymaking program and is described below in greater detail. Then, the Department of Health and Human ServicesDivision of Maternal and Child Health, soon following in 1989, adopted the philosophy that services for children with special health care needs should be family-centered, communitybased, coordinated, comprehensive, and culturally competent with passage of P.L. 101-239 Omnibus Budget Reconciliation Act. (Brewer, McPherson, Magrab, & Hutchins, 1989; Hutchins & McPherson, 1991; Shelton, Jeppson, & Johnson, 1987). These federal policies represented the transformations that were occurring across the country related to family support and to the recognition and rights of families.
The Developmental Disabilities Assistance and Bill of Rights Act (DD Act), originally titled the Developmental Disabilities Services and Facilities Construction Amendments of 1970, P.L. 517, was the first federal legislation specific to developing services for persons with developmental disabilities, with its original focus on the development of facilities and programs. However, by 1986, the DD Act had evolved along with our understanding of disability, to recognizing the significant role that families play in the everyday support for individuals with disabilities and in the development of policies that most impacts their lives and services. The following section will highlight how the concept of family support threads throughout this federal legislation and how the DD Act served as the impetus to the development of the Partners in Policymaking program. The DD Act is designed to assure that individuals with developmental disabilities and their families participate in the design of and have access to culturally competent services, supports, and other assistance and opportunities that promote independence, productivity, integration, and inclusion into the community. The Administration of Developmental Disabilities serves as the federal agency that oversees the DD Acts implementation. The goals of the DD Act are accomplished through funding provided to four distinct but integrated entities in almost every state and territory; Councils on Developmental Disabilities, Protection and Advocacy Services, University Centers on Excellence in Developmental Disabilities, and Projects of National Significance.
The DD Act identifies Councils on Developmental Disabilities in each state and charges them with developing innovative and cost effective strategies to promote systemic change. The role of Protection and Advocacy Systems are to protect the legal and human rights of individuals with developmental disabilities through legal, administrative and other appropriate remedies. University Centers for Excellence in Developmental Disabilities (UCEDDs) provide interdisciplinary training to students and professionals, engage in cutting edge research, provide technical assistance, and direct services and supports to individuals with disabilities and their families. While Projects of National Significance support local and state projects which address emerging areas of concern that can be replicated across the nation. Each of these entities also identifies strategies for coordinating activities that would accomplish the overall goals of the DD Act, such as joint demonstration projects, shared information dissemination strategies or collaborative systems change initiatives.
With each reauthorization of the DD Act, the role of the family and individuals with developmental disabilities has grown in significance. Beginning in 1986 the reauthorization language was amended to recognize and mandate the role of parents and family members in the provision of services and policies for those with developmental disabilities. This amendment required that programs develop and implement meaningful participation and training for parents and family members. This is accomplished using a myriad of strategies; such as hiring family members and self-advocates in key roles, developing community advisory boards with family and self-advocate leaders from the state and infusing family leaders into interdisciplinary training opportunities.
In 2000 the DD Act was again reauthorized, this time it wasn’t just the role of families but the concept of family support overall that was elevated within the Act as Title II: Family Support. Family support was now explicitly recognized as an area of need and focus for research, education and services however no funding was appropriated (Beach Center on Disability, 2007a; Daniels et al., 2009). In response to this, the Administration on Developmental Disabilities used funding from the Projects of National Significance program to develop family support initiatives for individuals with developmental disabilities and their families (Knoll et al., 1990). These initiatives were designed to emphasize the important role of family and community members in the lives of individuals with disabilities with the provision of necessary support services (US Senate Report 100-113, 1987).
Thinking differently about supporting families means recognizing that people exist and have reciprocal roles within a family system, which adjust as the individual members change and age. The entire family, each of the individual members collectively but also the whole unit, needs support to ensure all of the members are able to successfully live a good life in the community.
Because of the role that families continue to play in the lives of their family members with intellectual and developmental disabilities, policies and practices must reflect the family as part of the system of support. This is especially important as the demands for services that support individuals with I/DD are increasing, while at the same time both state and federal funds are diminishing. This situation makes it critical for disability policies to acknowledge the family as a vital partner in supporting the individual to live in the community and to pursue independence, integration and full participation, and that policies and programs recognize both the individual within the context of the family and the needs of all the members.
To provide direction and guidance for such policy reform, a group of diverse national and state disability leaders met and developed recommendations on the types of supports families need to serve in this role, and made recommendations for advancing a national agenda on supporting the family at the Johnson Foundation’s Wingspread Conference Center in March 2011.
The result of this meeting – the document Building a National Agenda for Supporting Families with A Member with Intellectual and Developmental Disabilities (often referred to as the “Wingspread Report”) – highlights the importance of moving from “Family Support” as a program to “Supporting Families” as a paradigm and set of guiding principles for all that a system does to support a person in the context of their family and community.
The “Wingspread report” received widespread support, and served as a catalyst for several key initiatives funded and supported by the Administration for Community Living, including the National Community of Practice on Supporting Families (CoP), which continues to provide leadership nationally and support to states to inform practices and identify policies for advancing supports to families across the lifespan.
Click here to download and the read the report.
Hecht, E., Reynolds, M., Agosta, J., & McGinley, K. (2011). Building an agenda for supporting families with a member with intellectual and developmental disabilities. Report of the Wingspread Conference on building a family support agenda, March 6-8, 2011. Racine, Wisconsin: Johnson Foundation.
Family Support, as many different fields know of it and refer to it, is a program. We believe that supporting families means actively carrying out a comprehensive and coordinated set of strategies that are designed to ensure that families who are assisting family members with intellectual disabilities/developmental disabilities (ID/DD) have access to person-centered and family-centered resources, supports, services, and other assistance. These strategies are directed to the family unit, but ultimately benefit the individual with ID/DD.
Supporting families requires a comprehensive and coordinated infrastructure that includes the following strategies:
- Education and training on how to access and develop options, opportunities and best practices within and outside of disability services
- Connections to other families and to self-advocates
- Collaborative processes to plan, explore, problem-solve and support a vision for the future for their family member with a disability and entire family system, starting early and continuing across the lifespan
- Mechanisms to assist in navigating and accessing services and supports within and outside of disability service systems
- Recognition of and mechanisms to address issues related to poverty
- Funding for goods and services specific to the support and/or caregiving role for the person with I/DD across the lifespan (e. g., respite, home modifications, cash assistance, assistive technology)
- Plan for crisis prevention/intervention for families and other caregivers
- Training to enhance the family’s ability to advocate for services and policies
- System for accountability and quality assurance through data collection, evaluation and feedback loop components