The Family Voices history is best told by describing our achievements. Those achievements rest on the accomplishments of those who preceded us. It is their history that makes our history possible.
Before There Was Family Voices
Today, most families who have children with special health care needs find it hard to imagine what it was like when babies with disabilities were never expected to live beyond infancy, or if they did, they were quickly shunted off to the nearest institution, perhaps never to be seen again. Parents were counseled by their doctors to institutionalize their children “for the sake of your marriage” or “for your other children.” Many parents, of course, heeded that advice. They felt they had no choice, because they had no help at home, no therapies or other services in their communities, no place for their son or daughter with special needs to learn, play, and thrive. Other parents questioned their physicians’ words and brought their child into their family to love and be loved, no matter the consequences.
It’s almost impossible to pinpoint when things for children and youth with disabilities began to change. Was it when the Children’s Bureau was established in 1935 and “crippled children” (its term) were acknowledged as present and deserving of care and attention? Was it decades later, in the 1960s, when the Civil Rights Movement caused people to think about discrimination of any kind? Or later in the 1960s when Medicaid was created? Was it the events leading up to the passage of the federal special education law, P.L.94-142 (now called IDEA) in 1975? In any case, by the end of the 1970s, families and many of their professional partners agreed that children, disabled and nondisabled, with chronic health conditions and without, belonged with their families, in their communities, and with their friends. They belonged at home.
During the past 30 or so years, life has changed irrevocably for children and youth with special health care needs. Family Voices traces its roots back to those first courageous families who disagreed with the physician who counseled an institution for their son; or who insisted on staying with their hospitalized daughter; or who convinced the neighborhood school to enroll their child.
The Family Voices History
We Bring Our Children Home
The creation of Medicaid Home- and Community-Based Waivers helped end the practice of institutionalizing children who were disabled or chronically ill. With the flourish of his pen, President Ronald Reagan approved legislation in 1981 that created a new way of caring for children and adults with disabilities. (Medicaid is the state-federal program that finances health care for eligible populations, including the disabled, poor and elderly.) Medicaid waivers were conceived by Julie Beckett, an Iowa mother who now serves on the Family Voices Board, her congressman, and federal Medicaid officials. Waivers are the financial mechanisms that help support health and related services, allowing children and adults to live at home, rather than in large, expensive, anonymous institutions. Once the first state Medicaid agency applied for and received a waiver from the federal government, other states began to apply. As a result, thousands of children who in the past might have lived in hospitals or state institutions now live at home. Medicaid waivers have not solved all the problems families face in finding health care financing and services for our children. Waivers can be complicated and are often bureaucratic nightmares. But Medicaid waivers set a precedent that cannot be denied: children and adults with disabilities and special health care needs can be cared for safely at home and in their communities at lower costs and with greater satisfaction than in institutions. The Family Voices community includes some of the nation’s most sought-after experts on federal and state Medicaid waiver programs. We train families and professional partners in the intricacies of applying for waivers, assist individual families with waiver problems, keep advocates updated on the latest waiver policies, and work toward additional and streamlined Medicaid waivers.
We Help Other Families
One of the founding purposes of Family Voices was to assist veteran parents to help other families raising their children with special health care needs. Experienced families listen and answer new families’ questions about a new diagnosis, help them find an accommodating dentist, or assist in negotiations with insurance companies. We help other families address language and racial barriers, enroll a child in the neighborhood school, improve hospital policies, explain complicated Medicaid rules, and advocate for better preschools. Family Voices has become a national clearinghouse of information and support. We began with faxes and monthly mailings to state leaders from the New Mexico office – staffed only by volunteers for several years. With improvements in electronic communications, Family Voices now posts electronic messages to our stakeholders throughout the work day, hosts a comprehensive website that includes many of our written materials, and leads topical conference calls to our leaders and partners. We also publish guidance materials and information on a variety of topics. However, Family Voices’ excellent materials and electronic communications only underpin that most important connection of all – face-to-face interaction between families.
The following story is about a Family Voices leader, Laura Royal of Georgia, who recently passed away. Her friend and mentor, Cindy Arceneaux, shared this memory with the Family Voices community after Laura’s death. It says it all.
“Laura and Jenny (another Family Voices leader) and I once drove to the middle of nowhere, or what we fondly called ‘Podunk,’ to help parents of an infant understand insurance, Medicaid, Early Intervention, etc. We found a family living in a trailer, surrounded by woods, with the nearest emergency treatment too many miles away. Their infant was turning blue when we peeped in at him. No one had taught the parents to suction the child. As parents of children who were medically fragile, Laura and Jenny dealt with these medical issues routinely and were able to advise the parents. The dad kept insisting that they pay us in venison. We kept insisting that their payment was offering information to other families. Laura said it was a matter of pride that the dad pay, and she thanked him for the venison. Laura worked with that family for quite sometime and we advocated with and for them with state agencies. Laura's life definitely had a positive impact on others. Can we ask for any more than that?”
We Improve Hospital Policies
Many of Family Voices’ leaders got their start as advocates when their children were hospitalized. Remember the prominently displayed signs in hospitals about “Visiting Hours”? Thirty years ago, when a child was hospitalized, her parents could visit her only during a few restricted hours each day. In the 1970s, parents approached hospital administrators about allowing family members to stay with their hospitalized children for longer periods of time. They were successful. Restrictions on visiting slowly diminished. Parents could come any time. Older siblings could quietly play with a hospitalized brother or sister. When nothing outrageous occurred from open visiting hours, we asked to stay overnight with our children, to be present as they underwent anesthesia and when they were in the recovery room. Families are now acknowledged as part of the healing team. We serve on hospital advisory boards, staff inpatient and out-patient clinics, provide parent support in intensive care units, and help train pediatric students and residents. We know that quality improves and satisfaction – for everyone – soars when families and family-centered care permeate an institution. Among Family Voices’ most important partners are children’s hospitals and the health professionals who work in them. Family Voices teams up with National Association of Children’s Hospitals and Related Institutions (NACHRI), to improve federal, state and local policies that impact hospitalized children and their families.
We Believe Every Child Has the Right to Go to School
In almost every school in this country, there are children with disabilities and chronic conditions learning alongside their friends. Unfortunately, the federal special education law, IDEA, was not commonly interpreted to require inclusion until the late 1990s. It has taken enormous efforts from individual families, family organizations such as Family Voices, and education advocates to convince public school systems that children with disabilities thrive in regular school settings, as do their peers. Through unrelenting work with school boards, PTAs, individual school principals and teachers, by seeking media help and taking cases to local and state courts – even to the Supreme Court – families have changed attitudes and education practices at every level. Students with disabilities – the Kids as Self Advocates (KASA) youth, for example – are their own best advocates: their determination to be educated with their friends and neighbors is the best argument for and example of inclusion. To keep education inclusion moving toward universal acceptance, many Family Voices leaders staff statewide special education parent training organizations. We serve on state and local special education advisory commissions. We mentor and guide families new to the complexities of inclusive education. “What Does Normal Mean,” a documentary film about inclusive education that was shown throughout the country on PBS stations, features a Family Voices family and is distributed by Family Voices.
We Are Fathers and Advocates
Family Voices would not exist had fathers not been front and center from the beginning. Fathers of children with special health care needs were present at our organizational meeting in 1992. For almost 10 years, one father wrote or edited Family Voices grant proposals, set up our first database, developed an initial bookkeeping system, custom-built the desks in the Family Voices national office, and organized and facilitated the first national conference – as a volunteer. Throughout the country, fathers quietly took on similar tasks to create and keep a state Family Voices organization running. Fathers have gradually become a more visible presence as advocates. A couple of fathers – Rodney Farley of Arkansas was among the first – staff state Title V programs, where they organize family networks, maintain a family presence in agency deliberations, and model the important role that fathers can play when welcomed and given the opportunity. In addition to their regular jobs, several fathers are Family Voices state and regional network leaders, serve on the Family Voices Board of Directors, and carve out unique roles as mentors to other dads who are also actively engaged in raising and advocating for their children.
We Seek Cultural Competence
Our children and youth with special health care needs reflect the demographics of this country. Therefore, Family Voices strives to provide culturally and linguistically competent assistance and materials, and reflect cultural diversity and competence in all we do, including the diversity of our network leaders, staff, and board. With gentle encouragement from Diana Denboba at the federal Maternal and Child Health Bureau (MCHB), we have found that our best guidance and assistance about cultural competence often comes from our national grassroots network of family leaders. For example, California Family Voices is part of a large parent organization that trains and publishes materials in several languages, as does the Family Voices organization in Massachusetts. Those materials are available to the Family Voices community through our national listservs and in our trainings on cultural, linguistic, and racial competencies. Because we understand and experience racial disparities in the provision of health care and disability services, Family Voices has developed projects that focus on specific underserved communities. Trish Thomas of Laguna Pueblo, one of our most veteran staff members, has raised awareness about American Indian children and youth with special health care needs with tribal leaders and health professionals across the country. Family Voices maintains a long-term organizational partnership with the National Center on Cultural Competence (NCCC), our staff and network leaders frequently serving on its advisory committees and projects. Many Family Voices materials are translated into Spanish and can be found on our website or in print form.
We Become Researchers
In 1993, a White House official explaining why President Clinton’s Health Reform Plan had no provisions for children with special health care needs stated, “Actuarially, those children do not exist.” We knew “those children” existed, but many important people did not. Since then, Family Voices national and state leaders, government officials and researchers have worked together to define children with special health care needs, count them, and ensure that health policies take them into account. In 1994-95, a small panel of experts, including a Family Voices representative, developed the first formal definition of children with special health care needs for MCHB. Shortly afterwards, Nora Wells of Family Voices oversaw a modest survey to capture family experiences with health services. In 1998, Nora led a 20-state survey, “Your Voice Counts,” jointly run by Family Voices and Brandeis University, to understand and describe families’ experiences and challenges with health systems. That survey, we like to think, helped lead to State and Local Area Integrated Telephone Survey (SLAITS), the largest national telephone survey of families ever conducted. Sponsored by the Centers for Disease Control (CDC) and MCHB, SLAITS provided concrete data about children and youth with special health care needs and their families. SLAITS concluded that there are more than nine million children and youth with special health care needs in the United States. Family Voices had a key role in the SLAITS survey. Other research about our children, youth, and families continues through partnerships between Family Voices and professional researchers. Family Voices state leaders also routinely collect valuable state and local data about children and youth with special health care needs and their families; it is aggregated and analyzed by family-professional research teams to inform policy development. We do not let research results and data sit on academic shelves; instead, we help translate research into understandable information to fuel systems improvement.
We Live Family-Centered Care
From the very beginning, the principles of family-centered care have been embedded in all Family Voices messages. Why? Because we know that the provision of healthcare to our sons and daughters is not satisfactory – to anyone – unless the family is included as an equal partner. As we said in one of our first brochures, “The family is a child’s most consistent healthcare provider.” Twenty-four hours a day, at home or in the hospital, we are there. Working with leaders such as Dr. Merle McPherson at MCHB, Family Voices has raised awareness about the importance of family-centered care with health providers, policymakers, and families themselves. When the Medical Home campaign was first launched by MCHB and the American Academy of Pediatrics (AAP), Family Voices made it clear that this worthy concept – that every child deserves a consistent source of medical care – could not succeed without family leaders as partners. Bright Futures, an MCHB project giving family-friendly health and development guidance to parents of all children, is run by Barbara Popper and Betsy Anderson, two Family Voices staff who have led family-centered projects for more than 30 years. When family leaders serve on advisory boards, we are there to assure that policies and programs are family-centered. Family Voices has become a primary source of expert consultation about family-centered care for health providers, policymakers, funders, advocates, and the media.
We Improve State Policies
Because the Family Voices network is state-based, its leaders keep abreast of policy and regulatory developments that might impact a state’s children and youth with special health care needs and their families. Recognized as expert stakeholders by government and private leaders, we are key players in improving state policies. We work with state agencies, place families on state and local government advisory commissions, and as citizens, we participate in the legislative process. A recent email from a Family Voices state leader, Donene Feist, describes a typical effort. It’s about working to pass the Family Opportunity Act, a Medicaid program that will help hundreds of families in North Dakota.
“Last week, on Thursday evening, we were told our bill was going to get killed. I rallied the families and the bill passed the Senate on Friday. Over the weekend, many families contacted their Senators to encourage their House colleagues to vote for it…especially those on the Appropriations Committee. It passed House Appropriations on Monday. Then it went to the House Floor. Families did not rest. They e-mailed, called, and spoke in person with their House members. The bill passed the House. It was kind of surreal. This really was a bipartisan effort. We will have a press conference with the Governor when he signs it. For me, this was about Arianna Kaseman. She is one of the kids who would have benefited from the Family Opportunity Act. At the beginning of March, she died. Her funeral was on the day of one of the hearings, so we honored her that day. Her mom and dad and little brother (who also has the same diagnosis) will be my guests of honor when the Governor signs the legislation. It is for them...and those to come. Of course, this is for all the many other families and their children – the little Allisons, Aarons, Elizabeths, Laikins – and the many other children in this state who might benefit from this bill. Some of the families will attend the 2007 Family Voices conference with me. I have to emphasize what an eye-opener this was for me…grassroots efforts really work!
P.S. I haven't celebrated yet. But tomorrow my husband and I are going to see Eric Clapton. On Saturday, our daughter will be at her first prom. And on Monday, our son turned 21. So it has been quite a week indeed.”
We Improve Federal Policies
Family Voices leaders helped develop the State Children’s Health Insurance program (S-CHIP). During the S-CHIP campaign, we tried to ensure that it would adequately cover children and youth with special health care needs, often arguing our case at the highest and most public levels in Washington, DC. We also worked with disability and education coalitions during reauthorization of IDEA, the special education law. We fought to assure that the least harm was done when the Children’s Social Security program came under fire from Congress.
We know that millions of middle-class families have private health insurance that does not cover critical services for children and youth with special health care needs. So Family Voices recommended a change in the federal Medicaid law to allow families to purchase Medicaid. Because most families also lack adequate information when they must make decisions on behalf of their children, we also recommended the creation of state-based Family-to-Family Health Information Centers. Congress wrapped these (and related initiatives) into a package called the Family Opportunity Act (FOA). For five long years, Family Voices and Congressional leaders worked for its passage. The FOA finally passed in 2005.
Family Voices also assists with the improvement of federal policy in several other ways. As one of the few truly national grassroots networks in the country, we are frequently asked by other nonprofit organizations, as well as White House and Congressional leaders and reporters, to locate families, children, and youth who will testify at congressional hearings or be available for national press conferences. The community-based nature of Family Voices also enables us to bring local and state issues to the attention of policymakers in Washington. We have made a difference!
We Encourage Youth to Speak Out
When Family Voices was comparatively new, some of our sons and daughters began to ask how they might become their own advocates. An articulate letter to the Board of Directors from Janelle Wells, then a Florida teenager with special health care needs, convinced Family Voices leaders to consider creating a new (and young) activist arm. Kids as Self-Advocates (KASA) has its own national Advisory Board composed of young men and women from a diversity of racial and ethnic backgrounds who live throughout the country and have disabilities that range from cerebral palsy to deafness, phocomelia, scoliosis, learning disabilities, and beyond. The KASA Advisory Board directs and decides KASA activities and priorities. KASA’s website, speaks directly to youth, providing provocative, courageous, and humorous personal stories by KASA writers. The website gives access to youth-generated resources not often available in the average hometown: guidance on staying safe, civil rights and advocacy, dating and relationships, transportation – all at a youth’s fingertips, no matter where they live. KASA depends on grants to fund its work, from its website to its training conferences. KASA youth have participated in national advocacy events and marches. KASA is a unique training ground for youth who want to make a difference, and KASA is creating its own history.
We Partner with Government Agencies
In describing an opportunity to help a federal agency implement the principles of family-centered care, a physician friend of Family Voices once suggested that we “infect” the agency with our presence and ideas. Over the last 15 years, Family Voices has definitely “infected” many local, state, and federal agencies by building partnerships with them. The most effective example of this partnership is that between MCHB and Family Voices: we have served on MCHB’s proposal review committees for years; our leaders review state MCHB block grants; and Family Voices and MCHB have co-sponsored national and international events. MCHB has recognized that a family organization such as Family Voices is an effective messenger, carrying its policies of partnership and family-centered care to multiple local, state, and federal stakeholders. The same is true of MCHB counterparts in the states, where Title V programs hire family leaders for outreach and training and invite families to serve on their parent advisory councils. In addition, some Title V agencies house the state Family Voices office.
We Train Leaders
Where would Family Voices be today if there were not always a new crop of family leaders from many different racial and cultural communities ready to learn, advocate, and change the world? It’s not easy to keep up with young mothers and fathers who first advocated for their own child within health and other systems and then looked around and realized that other families also needed help. We have discovered that new leaders especially need training, materials, and moral support. From its inception, Family Voices has dedicated most of its personnel and funding resources to leadership training: face-to-face; train-the trainers; printed materials and handbooks; technical assistance via conference calls and the Internet; conferences; gentle guidance; inspiration; applause. Unlike most other groups, this unique community of families also requires child-care stipends, travel money, and respite care. The search for adequate financial and human resources to respond to this thirst for helping others will always be a challenge for Family Voices.
And yet, Family Voices will continue to respond to the thirst, until the day when all members of all families have health care services that are family-centered, community-based, comprehensive, coordinated and culturally competent, all families are included as decision makers at all levels of health care, and partnerships between families and professionals are the norm.