Families of Children with Disabilities Need and Deserve a Village
Parents Under Pressure: Struggling to Raise Children in an Unequal America recounts the stories of six overburdened families slogging through the cracks in America’s support systems.
In one chapter, Victoria and Nathaniel, whose child has autism, cerebral palsy, and limited ability to perform Activities of Daily Living (ADLs), find obtaining and coordinating services as strenuous as the daily care of their child. Below is a question and answer with the book’s author, Karen Zilberstein.
Why did you decide to write the book?
As a psychotherapist, I was seeing more and more families whose burdens exceeded what the helping systems could address. Even when their children qualified for various services, the parents felt besieged and exhausted by endless paperwork, negotiations with schools and providers, and wave after wave of appointments.
Many had to cut back on work to care for their child and manage the services. That meant they were also struggling financially, which limited their ability to get a break and take care of themselves. I wanted to portray their experiences, along with the complex cultural and political structures precipitating them, so that, as a society, we could begin to address the problem.
What are some of the difficulties families contend with?
Families whose children have complicated needs often find services mismatched to what they require. They can qualify for numerous types of therapies, but rarely get help with childcare or other household demands for which they have limited time. Sometimes frustratingly long waitlists exist for the services they need. At other times, they find providers who do not have adequate experience to be helpful. Frequently, parents discover they need to coordinate the various providers to ensure the services are beneficial.
For instance, Victoria and Nathaniel’s daughter received physical therapy (PT), occupational therapy (OT), and speech and communication skills. But each specialist worked independently, setting up unique times and agendas. The end result was a matrix of services with limited effectiveness.
Their daughter could not integrate each skill into larger tasks, so she made poor use of the training. It fell to Nathaniel and Victoria to work with the providers to revamp the program. They ended up organizing the specialists to work together on a single goal, each contributing a piece of the puzzle. When teaching their daughter to pick up a crayon, they had PT work on the arm and body motion, OT on the finger grip, and speech on the signaling.
Many families of special needs children also struggle with isolation, as their high burdens of care and children’s difficulties exclude them from many social and recreational activities. Studies show families with higher incomes and social supports tend to fare better than parents without those benefits. Families who are isolated and struggling financially suffer high rates of stress, depression, anxiety, and marital difficulties. Some parents seek out psychotherapy or medicine to cope, but neither addresses the full causes of their physical and emotional challenges.
Why do you think these problems are not adequately addressed by current service systems?
When researching the book, I spoke not only to numerous families, but also the providers working with them. Across the board, I found schools and agencies were themselves overwhelmed, underfunded, and unable to meet demands. They were constrained by rigid sources of funding that only allowed them to offer certain services, even when they knew families needed other types of help. Workers in many human services agencies also tend to carry high caseloads while receiving low pay. They, themselves, don’t have enough support.
Why don’t we fund and resource human services better?
I think it is in part because American society valorizes independence and personal responsibility and disdains dependency. We expect families to pull themselves up by their bootstraps, even if those straps are fraying and can’t support the load. At the same time, intensive parenting philosophies have developed that place more demands on families.
The end result is we expect parents to do more and more with less and less. Some families, if they have money and education, fare well enough in this environment. They have the resources to purchase extra help or challenge decisions with which they disagree, sometimes by hiring advocates or lawyers to bolster their causes. But many others are being left behind. Because the system works for some, we tend to blame those who are struggling, viewing them as short on ability or personal responsibility. In reality, the problem derives from a lack of public responsibility for families’ wellbeing.
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What can be done to improve the situation?
First, we need to acknowledge the legitimate difficulties families face, without judging them. Then, we need to look closely at what they need and do what we can to relieve their burdens. In the book, along with the families, I profile a number of innovative programs that seek to support families in more holistic ways through providing social supports.
In some ways, these programs seem to be offering novel ideas, but in reality, they are replicating trends in human history when parenting was more communal and children were considered the shared responsibility of a clan or neighborhood. Alloparenting, or the supervision and nurturance given by non-parental caregivers such as grandmothers, aunts, siblings, or others, is historically and cross-culturally more common than the nuclear family.
We need to build in those types of supports in our communities and systems of care. Families should not be struggling alone. They need, and deserve, a village to help.
This article was featured in Issue 93 – ASD Advice for Today and Tomorrow