Carol Levine: All in the Family: Children as Home Health Aides
An essay by Carol Levine, Director of the Families and Health Care Project
Miley Cyrus and other young celebrities aside, most American children and teens are not profit centers. But, without earning a penny, some add substantial economic value to their families. Harking back to an earlier time when children (the more the better) were valued as farmhands, domestic workers, wage earners, or marriageable ties to wealth or power, some children are becoming caregivers for their ill parents, grandparents, and siblings. To repeat, children (as in 8-to 18-year-olds) are becoming caregivers (as in giving injections, monitoring medications, talking to doctors and nurses, changing diapers) for their ill or disabled parents, grandparents, and siblings.
Caregiving in this context is not doing chores – running errands, cleaning up after dinner, walking the dog, or other ordinary and expected contributions to family life. This is caregiving as defined for adults, carrying the same responsibilities and burdens. These children are in effect home health aides. There is a difference of course. Home health aides are limited in the medical tasks they are allowed to perform. Children can do anything because they are all in the family.
Children take on these responsibilities for many reasons, primarily because they want to help and they love Mom or Grandma. But other factors are important; in most cases the family cannot afford or does not want outside help provided by “strangers.” And with the stumbling economy, and cutbacks in home care services, more children are likely to be enlisted in this role. This experience influences children’s lives and development, sometimes profoundly and in both positive and negative ways.
In any group of health or social service professionals, there will be several who chose their careers because they were child caregivers, even though they were probably never identified in that way. Many child caregivers become super-achievers at home and school. Others fail or drop out of school. Many carry into their adult lives resentment and anger at being saddled with so much caregiving responsibility at a young age, as well as emotional burdens beyond their capacity to understand and manage. Those who opt out--literally running away or refusing to help--also pay an emotional price.
In the past few decades adult caregivers have encountered a changed health care world, with more professional responsibilities outsourced to untrained families. These changes have made caregiving more complex for child caregivers as well. A recent article on the front page of the New York Times profiled Annemarie Lent, 13 years old, who “injects migraine medicine, dispenses pills, takes blood from her mother’s finger for tests and responds to seizures.” Annemarie’s mother has called the police several times; once Annemarie didn’t want to go to school but she was taken there in handcuffs. Another time, after hitting her mother in frustration, she was charged with assaulting a disabled person.
Christina Powell, also 13, takes care of her 78-year-old grandfather while her mother works. His chain-smoking aggravated Christina’s asthma, and when he first moved in with the family, he was continually drunk, went naked, and urinated everywhere “like a sprinkler system.” Christina gave him her bed and slept on chairs for a while.
Based on the online comments to the article, many Times readers were shocked that such situations exist. Others recounted their own experiences as child caregivers – none as extreme as the ones in the article – and wished that some recognition and support had been available for them. And some simply vented their rage at children who expect life to be fair and at “experts” (presumably the ones, including this writer, quoted in the article) who raise questions about putting children in these demanding roles. So much for our supposedly child-centered society.
Children are largely invisible in the mainstream caregiving world. All the major U.S. surveys of family caregivers include only people aged 18 and over, partly because 18 is the age at which respondents can consent for themselves and partly because it is the norm to think of children as requiring care, not providing it. In 2004 the National Alliance for Caregiving, a Washington-based advocacy organization, and the United Hospital Fund, a nonprofit New York City health services research and grant-making organization, conducted the first (and to date, only) U.S. survey of young caregivers aged 8 to 18.
This survey, funded by the U.S. Administration on Aging, found that nationwide there are approximately 1.3 to 1.4 million child caregivers. A third of child caregivers are aged 8 to 11, 38 percent are aged 12 to 15, and 31 percent are aged 16 to 18. Boys are as likely to be child caregivers as girls. Child caregivers tend to live in households with lower incomes than do noncaregivers, and they are less likely than noncaregivers to have two parents in their households. About three-quarters of the young caregivers care for a disabled or ill parent or grandparent, and about 10 percent care for an ill or disabled sibling.
The survey captured only a glimpse of their experiences, but some of the responses indicated emotional problems (especially among the boys) and a negative impact of caregiving on school and after-school activities. It is also undoubtedly an underestimate of the total number, since parents had to give consent for children to be interviewed, and they could listen to the interview if they chose (most didn’t). Parents with addiction problems or mental illnesses were unlikely to participate. Moreover, only English-speaking parents were interviewed.
Children do not fit into the available caregiver services. Organizations and programs are mostly geared toward the needs of middle-aged and older adults caring for aging parents and grandparents. There are some exceptions; for example, the National Multiple Sclerosis Society has special programs for children of their primary clients (young adults with M.S.), and has a website for children. Alateen has had support groups for children of alcoholic parents for decades. On the child welfare side, youth service organizations do not typically see child caregiving as part of their mission; they are already dealing with huge problems of poverty, education, and health care. Only the organization mentioned in the Times article, the Caregiving Youth Project in Boca Raton, Fla., is specifically aimed at child caregivers.
Contrast this paucity of resources with the prominence in the United Kingdom, Australia, New Zealand, and to a lesser extent, Canada, of “child carers,” as they are known. In the U.K., for example, child carers (age five and up) are counted in the census along with adult carers and have hundreds of special programs available through schools, carers’ centers, and the Internet. The Princess Royal Trust for Carers is the leading private organization serving them. Child caregiving became a major issue in the U, K. largely through the research and advocacy efforts of Saul Becker, professor of social policy and social care at the University of Nottingham.
The framework for including children had already been laid by the adult caregiver movement, which achieved the legislative inclusion of carers’ rights, carers’ allowances, flexible employment, and a national carers’ plan. Carers--adults and children--in the U.K. have a far more powerful voice than caregivers in the U.S., not to mention universal health care. Carers in the U.K., however, have many of the same problems as caregivers in the U.S.--a disconnect between health care and social services, lack of resources, and inadequate communication with health professionals.
Beyond recognition and program development, however, some difficult ethical choices must be made. What are appropriate responsibilities for children of different ages, abilities, relationships with parents or grandparents, cultural backgrounds, and other factors? Are there duties that should never be assigned to child caregivers? What is the line between parental choice and abuse and neglect? And when childish frustration and anger turn against a vulnerable parent, what is the appropriate response?
Some of the early attention to child carers in the U.K. was criticized by disability advocates for apparently placing children’s interests in opposition to their parents. How does a program strike a balance between respecting parental rights and needs and advocating for children? Are some situations so perilous for both parent and child that outside intervention is the best answer? And where are the health care professionals taking care of the ill parent or grandparent? Are they truly unaware of the situation? Are they reluctant to ask questions because they don’t want to deal with the answers? What, in fact, are their professional responsibilities to a child who is not their patient and who may be the primary link to the patient?
So far there are no answers to these questions, or even an appropriate venue to discuss them – one that takes into account the variety of family structures and values, children’s developmental stages, alternatives to child caregiving, and practical ways to support children. Child caregivers should be able to gain valuable insights and capacities, as well as compassion, but they should not be forced to forgo their childhood and close the door on the future.