Documentary explores challenges faced by parent caregivers of children with disabilities

One in six children in the U.S. has a special health care need, chronic illness, or disability. For families caring for children and adults with profound disabilities, the stress and demands can be challenging. 

A new documentary, “Unseen: How We’re Failing Parent Caregivers & Why It Matters,” explores the lives of parent caregivers for children and adults who are disabled or medically complex, and a society that doesn’t adequately support them.

The documentary will be shown in West Michigan thanks to The Lucas Project, in partnership with Gracious Grounds, Disability Network Lakeshore (DNL), Homes Giving Hope, and Kenzie’s Be Cafe.

"Documentaries like this do so much more than educate the broader community, they encourage conversations that can lead to increased resources and innovative solutions," says Stacey Trowbridge, MPA, DNL's Director of Community Development.

The screening will be at the Grand Haven 9 Theater, followed by a panel discussion with parents who plan to share their stories as caregivers. Supporting organizations will be available to discuss their services for individuals with disabilities. A virtual viewing option is available as well. The Feb. 26 event runs 4-7 p.m. Tickets range from $15 to $30, and are available at

‘Rally for caregivers’

“West Michigan has done an incredible job of supporting special needs families with housing and resources, and it’s encouraging to see so many causes recognize the need to rally for caregivers,” says Jess Ronne, The Lucas Project founder. “Society is only as healthy as the caregivers. If you want a healthy society, you need to take care of the caregiver’s needs.” 

The five organizations sponsoring the screening are committed to supporting people with disabilities and/or their caregivers. 

The Lucas Project is a nonprofit organization that provides recognition, respite, and resources to family caregivers of those with special needs. 

Gracious Grounds provides supported independent housing in a community setting to individuals with unique abilities. 

Homes Giving Hope provides quality homes for adults with mild intellectual and developmental disabilities where they can safely grow in their independence and live a fulfilling life within a Christ-centered community.

Disability Network Lakeshore is committed to accessibility and inclusion and is guided by the independent living philosophy, which endorses consumer control. Its mission is to connect people with disabilities to resources and opportunities while building communities where everyone can participate, contribute, and belong.

Kenzie’s Be Cafe provides meaningful employment for people with intellectual and developmental disabilities. 

Honest look at caregivers’ challenges

An estimated 16.8 million people in the U.S. are caring for a child with disabilities or complex medical needs. The demands of daily life and chronic stress can harm the mental and physical wellbeing of parent caregivers. With limited accommodations and uncertainty about the future, caregivers often face isolation and exhaustion.

In “Unseen,” parents are brutally honest about their experience, providing insights such as:

• “We’re just hanging on by a thread most of the time. The hardest part is that it’s nobody’s fault.
It’s not our fault. It’s not his fault. It’s just part of our life.”
• “Our parenting and caregiving will continue indefinitely, and that’s just overwhelming.”
• “Most caregivers are not fine, and they are not doing well.”

Video diaries from diverse caregivers featured in the film illustrate the universality of the topics, while interviews with mental health and legal experts provide a broader view of the societal impacts.

The documentary’s goal is to increase support and resources for caregiving families through the power of unfiltered, compelling stories, cultivating compassion and serving as a catalyst for change for caregivers. 

This article is a part of the year-long series Disability Inclusion exploring the state of West Michigan’s growing disability community. The series is made possible through a partnership with Centers for Independent Living organizations across West Michigan.
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