Lucas Ronne was a miracle baby, surviving against all odds with severe hydrocephalus. Now a teenager, he requires help bathing, eating, and moving. Since the onset of puberty, he experiences outbursts where he bites, scratches, hits, and screams. His parents, Jess and Ryan, describe feeling a constant state of anxiety. A new documentary, Unseen, explores the challenges faced by the Ronnes and other U.S. caregivers, underscoring the overwhelming needs faced by caregivers.
Unseen director and producer Amanda Dyer found no shortage of special needs families willing to share similar experiences. “Some of that is due to feeling that nobody’s listening,” says Dyer. Throughout Unseen, parents describe feeling trapped, hopeless, and lonely, as well as in constant survival mode. They recount myriad meetings, appointments, and therapies. Dyer hopes Unseen sheds light on these and other complex challenges caregivers face. “People started telling us the same things over and over,” she says. “That’s when we realized that this was a really important topic.”
Jess Ronne, whose body physically aches due to stress, is angry with the system and feels like she’s failing her child and family. “You wake up to the realization that this world is not made for your child, but you love him or her so much, you’ll do whatever it takes to give them the best life possible. So you just keep going,” Jess explains in the film. “You have to keep moving forward, because your child needs you. It’s a lonely path. Often, it is you, the caregiver, paving this path for your child.”
The struggle to find child care
When Dyer first started working on Unseen, she assumed that there was a comprehensive infrastructure supporting caregivers. “Now that seems kind of laughable,” she says. “We have talked to families and heard how limited the resources can be and how much they have to fight and battle for what is available.” Ronne, for example, spent hours on the phone seeking childcare for Lucas and was even rejected by special needs camps due to his incontinence.
At 6 months of age, Max*, not featured in the film, was diagnosed with Schaaf-Yang Syndrome, a rare genetic disorder. Now 11 months old, it is unknown if he will ever walk, talk, or be potty-trained. He also has uncontrolled epilepsy. Max’s working mother, Julia*, a lawyer who lives in New York, had nowhere to turn for daily care. A state government organization for families of children with developmental disabilities put her on a waitlist for an appointment to talk with an aid worker, mentioning that no one had come off the waitlist in the last two years. Public schools told her they don’t assist kids under five years of age, and other aid organizations informed her that they don’t help families find nursing homecare or medical daycare. Worse still, pediatricians declined enrollment, stating Max’s case is too complex for their practices. “The systems that we have been referred to have told me point blank, ‘that’s not what they do or they can’t help,’” says Julia. “In the end, I’m actually not sure what they do, because none of them were particularly useful.” Like many parents, Julia turned to online nanny companies to find help. After interviewing dozens of nannies, Julia finally found the right candidate, who had personal experience with disability, on Care.com.
Caregivers often struggle to find assistance, especially depending on their location and financial situation. “It can be a full-time job trying to find care and services,” says Kay Jankowski, PhD, the director of psychology services at Dartmouth Hitchcock Medical Center in Lebanon, New Hampshire.
Many nannies or daycare centers aren’t equipped to care for children with special needs, and the industry faces staff shortages and high turnover rates. “Even if families have the financial means to [pay for care], the challenge is getting and retaining quality providers,” says Danielle M. Simmons, PhD, the associate clinical director for integrated medical and behavioral health psychologists at Cincinnati Children’s Hospital in Ohio. In the end, parents of children with severe disorders say they frequently cannot find any outside help.
The other huge sticking point is, of course, cost. While state and federal programs provide financial aid to caregivers, “it can be difficult to identify what those funds are, how to access them, and then complete the necessary paperwork, especially when one’s time is taken up by caregiving,” says Jankowski.
Caregivers’ struggles with mental and physical health
Caregiving can profoundly impact a caregiver’s life, including their career, hobbies, relationships, and partnership, often suddenly and unexpectedly, and with little, or no, choice or control, Jankowski says. Caregiving doesn’t have a foreseeable end, adding to the mental load. “Taking on this role can shift a person’s sense of identity,” says Colleen Driscoll, PhD, a pediatric psychologist at the Children’s Hospital of Philadelphia in Pennsylvania. “Many parent-caregivers describe grieving their previous selves.” A child’s severe disorder affects the entire family, and this is the message that seems to be lost overall. Parents grieve their ended careers, friendships, lifestyle, and sometimes, their marriages.
Compared to parents of children without special needs, research suggests that parent-caregivers of kids with developmental disabilities are more likely to experience substantial stress and symptoms of depression, anxiety, and post-traumatic stress disorder (PTSD), says Jankowski. In addition to facing high levels of stress, caregivers often report putting their own needs last, says Driscoll. Studies show this can also impact their physical health, as well as their mental health.
Many parent-caregivers may not get the mental health support they need. The American Psychological Association offers questionnaires for caregivers to screen for depression, anxiety, and complicated grief. But there aren’t comprehensive national treatment guidelines for caregivers. “I think most pediatric medical providers, especially those who are caring for children with rare and severe disorders, focus on the child themselves, and not enough attention goes to the caregivers,” says Jankowski. “Yet, we know that we need healthy, well-supported caregivers to provide the care that these children need.”
How caregivers find support and community
Quality care from medical and mental health professionals, as well as strong support from friends, family, and partners, can buffer caregivers from the negative effects of extreme stress. “When people feel supported, they tend to do better both mentally and physically,” Jankowski says.
The challenge is finding that professional care, finding time it, and also figuring out how to communicate needs to friends and family, who never seem to fully understand. “I realize this is not easy, but in order for them to be able to sustain intense caregiving under those circumstances for long periods of time, they must be able to find ways to fill their gas tank,” Jankowski adds. This usually requires asking for assistance from family and friends. Unfortunately, even well-meaning loved ones may sometimes end up saying things that leave caregivers feeling even more alone, when it would be more helpful to “simply listen and/or offer to provide some type of material support,” says Jankowski.
Parent-caregivers are resourceful and often build their own community through disorder-specific non-profit organizations, says Driscoll, such as Cure SMA and Parent Project Muscular Dystrophy. These organizations provide resources and information while also normalizing families’ experiences. Julia has found support in Facebook groups for parents of special needs children. “In fact, one of the state-sponsored agencies pointed me in the direction of a Facebook group for parents, because that’s the most effective way of figuring out how the system works, which I find simultaneously hilarious and appalling,” she says.
The resources available to caregivers—and why we need more
The U.S. already faces a crisis in affordable childcare and early childhood education. “It’s only more impactful for kids who have special needs,” says Julia. Resources for special needs families exist but vary depending on where you live. Most states have self-directed Medicaid programs providing financial assistance for home and community-based supports, including payment to family caregivers. Some states offer Structured Family Caregiving, which provides additional financial and other supports. Social Security Income (SSI) pays monthly cash benefits to families with children who are disabled and meet certain income requirements. And the Family and Medical Leave Act guarantees up to 12 weeks of unpaid caregiver leave if you work for an employer with more than 50 employees. Eleven states provide paid family leave.
Respite care—or short-term care of special needs children, to give caregivers a break—is another critical resource. “It is vitally important for caregivers to take care of themselves,” says Jankowski. “Respite care can be such a key component to patient and family needs,” says Simmons. They both stress that it’s important to search for well-trained and trustworthy service providers, which you can find through organizations like ARCH, the National Respite Network and Resource Center.
Activists like Crystal Polk, a licensed clinical social worker featured in Unseen, argue we need a larger system to provide supports for family, not just the child. That might look like a publicly supported network of affordable and competent caregiving facilities for special needs children, similar to the public-school system, says Julia. Improved family leave policies could include leaves of absence, paid family leave, and flexible work schedules for parent-caregivers of children with special needs. “These situations are not one-size-fits-all, and therefore we need policies that can flexibly account for differences in needs,” Jankowski says.
Despite the endless hurdles, many parent-caregivers embrace their role as both the primary caregiver, and as the expert of their child. “They experience an increased sense of meaning and purpose in life,” says Driscoll, as they work to be their child’s advocate in all facets of life.
However, caregivers need help. The financial, physical and mental burdens are too much for most to cope successfully.
Dyer hopes that Unseen will not only shed much-needed light on the prevalence and challenges of caregiving, but will also provide a sense of visibility and community for caregivers themselves. “That can be a cathartic experience, to see that you’re not alone,” she says.
References and Further Reading:
*Julia has asked to use first names only, to protect the family’s privacy.