REMARKS BY MRS. GORE
FAMILY RE-UNION 7: Families and Health
Tuesday, June 23, 1998
All too often, we think of illness as affecting only the person with the diagnosis, whether it's cancer, AIDS, diabetes, or mental illness. And, when that person is a parent, we often forget about the impact of the illness on a child. But, as this video we just saw so elegantly reminds us, illness doesn't just strike a single family member --its repercussions reverberate throughout the family as a whole. That's what this year's Family Re-Union is all about.
You see, it's time to remind this Nation that health and illness affect each and every family in one way or another; and they touch every single member of that family in both obvious and very subtle, but compelling ways. And remember, families now can include several generations caring for each other. It could be that you're in mid-life, juggling the responsibilities of a job, of raising young children, and, of caring in your home for an older parent with Alzheimer's or Parkinson's disease.
Or it could be that you're a grandparent, caring for your grandchildren while you own child is battling a health problem, whether that disease is cancer or heart disease, mental illness or substance abuse.
Or, it could even be that you're a child or adolescent trying to remain childlike --playing with friends, doing homework, dreaming dreams, and making future plans. But the responsibilities, fears, and confusion of coming to grips with a major illness in the family may change all that.
In each case, though, something remarkable often happens. The families not only survive, they actually thrive. We don't give credit, particularly to children, for the empathy, the resilience, and the downright individual strength that we see in families facing a medical crisis, whether the crisis affects a sibling, a parent, or a grandparent.
And the remarkable part of all of this, is that it happens in so very many families. We know that almost 10% of children live in families in which a parent has a physical disability. We also know that of the nearly 180,000 women who are diagnosed with breast cancer each year (that's 1 woman diagnosed every 3 minutes!), 15-30% of them have children living at home. And we know that the number of children who will lose their mothers to AIDS is counted in the tens of thousands.
But, that's only a few of the serious illnesses that can befall a child's family. Stop and consider the impact of mental illness, for example. As painful and as debilitating as heart disease, depression alone affects 1 in 7 women --and most of the time, they're younger women, just starting a family or raising children.
Science and health services research have taught us a lot about how illnesses affect the individual who experiences them. But only now are we beginning to understand the depth and breadth of the effects on other family members, particularly children. Only now are programs and services beginning to embrace the children of families in which illness is a visitor.
A very brave, insightful, and engaging young man, Jon Wagner-Holtz, who you will meet personally a bit later, has put it most eloquently when he said, and I quote: "When my mother got cancer, my whole family got cancer. But the doctors only knew how to treat my mother."
And that's why I'm so very excited to be able to announce to all of you that we're going to help move this issue to the forefront of the public conscience. Today, two important agencies in the Department of Health and Human Services --SAMHSA's Federal Center for Mental Health Services and the National Cancer Institute --have committed to join with families, scientists, caregivers, private foundations, and health and social services professionals in dialogue to delineate what we know today and what we must do for tomorrow. A major gathering later this year --with participants representing all the groups I just mentioned -- will be convened to set an agenda for what each of us, working as partners, can do to help the children and families facing parental illness; how needed services can enhance the resilience inherent in all of us.
I want to talk for just a moment or two about why I keep using examples from mental health and why the Federal Center for Mental Health Services has taken the lead in developing this dialogue in the field. You see, whatever the illness, for those without family, peer, or community support, facing these challenges can be a lonely experience. As a long-time advocate for mental health, the issue of family illness strikes me as one that, until now, had not been adequately acknowledged in our efforts to promote mental health.
Frankly, I think that at least part of the problem is the stigma that is still attached to serious illness, particularly if that illness is a mental health problem. We know that seeking help is hard. Too many people are too overwhelmed or too afraid to reach out for help in managing the emotional side of a physical illness in the family.
But what if the family problem is a mental health one? Sadly, the vast majority of individuals needing mental health services do not seek or receive treatment of any sort. Only 4 in 10 individuals ever obtain professional help; and of those, only 1 in 4 receives treatment in the mental health sector.
And, of particular concern, an estimated 2/3 of all young people with mental health problems don't get treatment. And I don't need to remind any of you that these children are our future.
Another part of the problem is that, at least for children, many of the kinds of comprehensive, family-involved services that could help them are just not there. But a start is being made, particularly for those children at greatest need, those with serious emotional disturbances.
A remarkable 31-site program has been underway through the Federal Center for Mental Health Services that has been demonstrating just how well a comprehensive, family centered system of care can help these seriously ill children and adolescents and, at the same time, help the entire family. These programs work in partnership with the family to develop a unique service array tailored to the needs of the individual child and the family. The program doesn't just provide traditional mental health services. Instead it pulls together and integrates all the service areas that affect a child's life: mental and physical health, education, juvenile justice, substance abuse prevention, and family support.
It may include transportation, baby-sitting for other siblings, tutoring, and an array of other wrap-around approaches that are both flexible and driven by the individual family's needs and priorities.
And early results show that this approach works! And it works in ways that matter to families! It reduces the risk of encounters with the juvenile justice system. It increases school performance and improves grades. And, most importantly, it keeps families together.
It doesn't take much imagination to realizae that this model has important application to families in medical crisis. The very same sorts of family-centered wrap-around services can help ensure family resilience in the face of an illness under the family roof. They can help relieve both the physical and psychic burdens of caregiving experienced by the adult child, the caregiving grandparent, and the child or adolescent who's central role in the family has been replaced --for a time --by the need to battle a family member's disease. It's all about what Jon said --when one person becomes ill, the whole family experiences the illness in one way or another.
Before I close, I want to take a moment to celebrate so many of you here today, whether you're sitting on this panel or in the audience. So many of you have made such a difference in the lives of our own families and in the lives of your communities.
But, in particular, I want to acknowledge and applaud two very special young people whose lives have been touched by a family member's illness and from whom you will now hear. What makes them so very special is not just their own resilience in the face of a mother's illness, but also their dedication and resolve to help others confronting similar circumstances. It gives me much pride and great pleasure to introduce:
Jon Wagner-Holtz who founded Kids Konnected in 1993 when he was 11 years old, when his mother was diagnosed with breast cancer. Today, at age 17, he helps run a nationwide organization that provides information, education, peer counseling and support for the children of parents with cancer.
Stefany Pena, a 15 year old student at La Guardia High School for the Performing Arts, which was chronicled in the movie, Fame. She lost her mother to AIDS some time ago and since then, has been actively reaching out through the arts to other children who are now undergoing the same experience.