The Issues

A Statement from Parent Caregivers to All Viewers

This statement was created by parents who participated in a screening of the film in Washington state.

“We understand [the film includes] powerful descriptions of challenging behaviors. We as parents hold our loved one’s privacy and dignity in high regard. We don’t like sharing their most difficult moments in their life, but we have realized remaining silent about the day-to-day challenges is not beneficial to our children, who are not currently fully understood nor are they receiving the services and supports they desperately need. Examples and stories reveal the realities many individuals and families are facing, raise awareness, and encourage vital funding to address their unique needs.

Our beloved children are not the burden. Failing systems and the lack of help for families are the burden. While these are family stories, they are also true stories of policy failures, gaps in our systems, and services that do not exist.

We as caregivers want you to know we love parenting our children, we just need some help. These systems are failing not only individuals with disabilities or complex medical needs, their families, but also the caring professionals who seek to serve and support them and often experience the moral distress of not having enough help to offer.

Our wish is that everyone attending screenings — parents and caregivers, professionals, elected officials, self-advocates who experience disabilities, and community members — will join us in truly hearing and believing these stories and be driven to help us change the situation.

This film shares the raw truth about the challenges faced by many family caregivers. This is not a film about the lived experiences of individuals with intellectual or developmental disabilities, whose truths we also honor. It portrays the parent experience.”

Who is a Parent Caregiver?

A caregiver is a person who provides care and assistance to a person with limitations related to illness, injury or disability. A parent caregiver is providing care to their child (of any age) who needs some degree of assistance with everyday tasks, beyond what is typical for a person of a similar age. In the context of the film, the term “parent caregiver” refers to parents whose children have temporary or long-term physical, mental, developmental or intellectual disabilities, and those whose children have chronic illness or are considered medically complex. Parent caregivers have additional responsibilities that other parents typically do not.

References:

“Caregiving and Parenting Are Not the Same” by Erin Croyle, The Center for Family Involvement

“What is a Caregiver” from John Hopkins Medicine

On Terminology & Disability Language

There is little agreement on the preferred language to discuss disability. Many of the caregivers we spoke with in connection to the film use the term “special needs” to describe their role as a caregiver or their children. Because of the ubiquity and familiarity of the term “special needs” among nondisabled people, we suggest that it is uniquely effective at introducing a general audience to the broader world of disability, creating opportunities to educate and inform.

There is not currently an accepted way to discuss the level of support needed. The caregivers we spoke with use a variety of terms to describe their child’s support needs, and we believe that this is necessary to characterize their specific caregiving role.

The subjects in the film use the terminology they are personally most comfortable with. We do our best to use the neutral terms “disabled,” “disability,” and “medically complex” in general communications about the film.

While terminology will continue to evolve and the language in the film will likely become dated, we recognize that there are complex issues behind the discussion about disability language, and that word choice matters. Our primary objective is to accurately and honestly portray the experience of some parent caregivers, as they identify barriers and advocate for support for their children and the overall family system.

References:

Disability Language Style Guide, National Center on Disability & Journalism

Disability Language Guide, Stanford University

On Representing Disability & Consent

The experience of a parent caregiver is inextricably linked to that of the disabled or chronically ill child they provide care for. In the context of a visual and storytelling medium like a documentary film, it is not possible to accurately present the parent caregiver experience without sharing some specific details about the care recipient, the nature of their disability or condition, and the level of support they need.

Because sharing details involves the child’s privacy, and the child may or may not have the intellectual or developmental capacity to provide consent, choosing to share publicly must be a careful, informed choice by the parent caregivers who have a moral and legal obligation to act in the child’s best interest. For those that share as part of the film, it was a deliberate, thoughtful decision on behalf of both themselves and their child, with the goal of advocating for the family system. We have taken the utmost care to accurately and respectfully portray their stories.

On Balancing & Aligning the Interests of Caregivers & Disabled Individuals

We believe it’s possible to balance and respect the needs and interests of both disabled individuals and their caregivers, if we make room for complex and nuanced discussions.

Studies show that the physical and mental health of parents has a direct impact on the well-being of their children. Research also shows that many caregivers of disabled or chronically ill children feel caregiving has worsened their physical health and consider their situation to be emotionally stressful. The connection is clear: if we want to promote the overall health and well-being of disabled individuals, we must also prioritize the health and well-being of those who provide supportive care.

Promoting positive change for families involves identifying the barriers and challenges that caregivers experience. If caregivers do not speak openly and honestly about the challenges they face — out of fear of backlash or judgement from the community — factors that negatively contribute to their physical and emotional health can’t be understood and addressed on the individual, organizational or systemic level.

References:

“Mental health of children and parents —a strong connection” from the CDC

“Caregivers of Children: A Focused Look at Those Caring for A Child with Special Needs Under the Age of 18” from AARP

Why Caregiver Well-Being Matters

There are an estimated 16.8 million people in the U.S. who provide care to a child under 18 with disabilities. When you include all U.S. adults who provide unpaid assistance and support to an aging or disabled person, the count reaches 44 million. The body of research on this population makes it abundantly clear that caregivers are at risk.

Caregivers show higher levels of depression, stress and frustration, which can lead to substance abuse and other harmful behaviors directed at themselves or their loved one. They are in worse health and are more likely to develop serious illness. Complicating matters, they are more likely to lack health insurance coverage due to changes to their work situation. Additionally, women account for about two-thirds of all unpaid caregivers, and report both higher levels of depression and anxiety and lower levels of well-being and physical health than male caregivers.

Caregiver well-being is a public health issue with downstream effects for families, employers, our healthcare system, and our economy — in short, it impacts our shared future. We must explore individual, organizational and policy-level solutions that will enable real, positive change for caregivers and their families.

References:

“A Population at Risk” from the Family Caregiving Alliance

“Caregiving in the U.S.” from AARP