“You have to keep moving forward because your child needs you. It’s a lonely path. And often it is you, the caregiver, paving this path all by yourself for your child.”” — Jesse Ronne, Unseen

Throughout the parent-caregiving world this week, people are tuning into the online premier of Unseen: How We’re Failing Parent-Caregivers and Why It Matters.

If you haven’t read our piece on the documentary filmmaker’s process in that film, check out the May 1 issue.

Medical Motherhood

'Unseen' documentarian was shocked at the reality for parents raising disabled children

Listen now (13 min) | “I went in with the assumption that there’s resources that are available. Now, that sounds crazy.” — Amanda Dyer, Unseen producer and co-director It was kismet that brought filmmaker Amanda Dyer to produce the 46-minute documentary Unseen: How We’re Failing Parent Caregivers and Why It Matters…

a year ago · 2 likes · Shasta Kearns Moore

In Medical Motherhood’s May 21 discussion about the film, readers and podcast listeners said they wished the film had dug deeper into possible solutions.

Les Rogers, a former history teacher, said that in Oregon and across the country the solution that was long offered to caregivers was institutionalization. Now, the solution offered in many states is in-home caregiver hours, but that still falls short of the mark.

Where we need to get to, Rogers said, is “where families can choose what’s right for them and have funding to do it.”

Parent Sylvia Triplett agreed. “I think my biggest struggle with services and things is parents are not being trusted to make these choices.” Sylvia said that from schools, to healthcare, to social services, she gets treated like the enemy to her own child.

“I’m competent to make these decisions to figure these things out,” she said. “I’m the one bringing treatment ideas and things to the doctors… because I’m the one willing to stay up until 1 a.m. researching it.”

Asked if they felt judged as a parent-caregiver, the parents laughed because in our world it is a constant from all directions: professionals judge you for not doing enough, disability justice advocates judge you for being too ableist, people on the outside judge you for not showing up to things or always asking for help. We even laughed at ourselves for judging the family featured in the film. “That kid eats, man!” said one, whose daughter is tube-fed.

One of the goals of Unseen is to raise awareness around the difficulties of parent-caregiving. The filmmakers say they hope the story pushes people to ask parent-caregivers how they can help.

Rogers said when medical professionals counsel him to do “self-care,” he’s sometimes had success asking them to support the policies that allow for him and his family to be able to practice self-care.

“I kinda turn it back around on them in terms of the policy,” Rogers said, “and I think that’s the one productive thing that can come out of that conversation.”

Parent Gabriel Triplett said he feels like often professionals haven’t done their own self-care and emotional growth and aren’t in a position to offer that advice genuinely.

The parents also talked about wanting to get beyond the concept that their children are a “burden.”

“Our greatest disability is that the system is set up without supports,” Gabriel said. He said there are a lot of organizations and advocates that have already come up with solutions to the problems Unseen outlines. There are also a lot of institutional figures who are standing in the way of further progress, believing that the solutions have already been achieved. “The documentary that needs to be made now is about that.”

Gabriel shared a story of his son getting disrespected by a medical professional who didn’t wait long enough for him to answer a question. Gabriel said he wished the public at large could “try to understand what it’s like to love someone who is constantly rejected by the world around them. That’s a hard love to do. It has nothing to do with Oscar. It has everything to do with the faults of everyone around him, constantly.”

One thing Gabriel said the film did well was explain to people who might not understand how few childcare options there are for disabled children. He hoped people would ask themselves how they would cope with caring for any child that no one else would watch.

At the end of the day, we parent-caregivers are the ones filling the gap between our children’s abilities and what society expects from them. That is what it means to be a parent-caregiver and that is how society is failing us.

As Gabriel said, “I can’t see in the dark,” so society spends millions of dollars lighting street lamps and coming up with solutions for the inability to see in the dark. “They accommodate my inability. The disabled are those that society says – we’re not going to accommodate your inability,” he said.

Caregivers are the ones who make up that gap.

Watch Unseen: How We’re Failing Parent-Caregivers and Why It Matters online or visit its website for a caregiver toolbox and other resources.

Do you live in Oregon? Register for the United Cerebral Palsy of Oregon and SW Washington screening event and discussion May 23.

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Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From KFOR Oklahoma News 4: “The long wait almost over? Oklahoma lawmakers approve bill to eliminate 13-year-long waiting list for disability services”

The Oklahoma Senate chamber burst into applause Friday after the unanimous final passage of a bill eliminating the state’s 13-year waiting list for developmental disability services.
News 4 has been reporting on this important issue for months.
The waiting list for these services has grown to 13 years long.
That means, Oklahomans who first applied for a Medicaid waiver in 2009 are still waiting.
This week, the state legislature has unveiled their plan to use taxpayer dollars to eliminate the waiting list and fund services for every eligible Oklahoman on the list as of May 1, 2022.
As of this month, 5,134 Oklahoma families are waiting.
House Bill 4466 provides $32.5 million, the largest funding increase to this program in state history, to clear that waitlist.
[…]DHS has pledged an additional $19 million in cash, from operational efficiencies.
A state contribution of federal funding draws another $122 million in for a total investment of $174 million.

• From Providence Journal: “RI must pay $75K, create ombudsman for failure to provide child's special needs services”

The U.S. Department of Justice awarded the parents of a son diagnosed on the autism spectrum $75,000 in damages from the state for failing to ensure the family could access in-home services needed for the boy to continue to live at home.
U.S. Attorney Zachary Cunha’s office announced Wednesday that justice officials had entered a settlement agreement with the Rhode Island Executive Office of Health and Human Services to resolve alleged violations of the Americans with Disabilities Act.
The settlement grew from a 2018 complaint made by the parents of the unnamed minor to the U.S. Attorney’s office, alleging that the state failed to provide their son with home support services under the Rhode Island Medicaid/Katie Beckett Program administered through the state Executive Office of Health and Human Services. The Katie Beckett program allows certain children under age 19 who have long-term disabilities or complex medical needs to become Medicaid eligible.
[…] “This settlement agreement highlights the priorities of the Medicaid Program and our ongoing commitment to ensure that children and youth have access to high quality care in the least restrictive setting,” Ashley O’Shea, spokeswoman for the executive office, said in an email.
Samuel Salganik, executive director of the Rhode Island Parent Information Network, observed Wednesday that the COVID pandemic had laid bare the state's decades-long failure to adequately reimburse service providers, leading to dramatic staff shortages and families left without much-needed services.

• From News Center Maine: “Sanford school transforming the lives of children, adults”

For more than five decades, Waban Projects in Sanford has been providing education, programming and more for children and adults with intellectual disabilities in Maine.
[…]Anastasia and Bjorn Osiseck, both students at Waban, are just two examples of the transformations seen at the school. Their mother, Barbara Osiseck, said she couldn't be more thankful for the resources and support she has received.
"It’s interesting having two kiddos that are on the spectrum because they are so different. It’s actually really interesting how opposite they are," Osiseck said. "Anastasia is sensory, sensitive. So, she’s very much 'Don’t touch me, get away from me, I’m going to do my own thing.' And then Bjorn is quite the opposite. He’s very snuggly. He likes to ask for hugs. It’s his favorite thing."
Osiseck said the months leading up to getting her children placed at Waban were extremely challenging to navigate. Anastasia was completely non-verbal and Bjorn was displaying self-harming behaviors, like purposefully smashing his head off the wooden stair banister.
Osiseck said it was terrifying.
"You just notice little things, especially when you have a big family and you have nieces and nephews, and you see very obvious signs of development. Like saying hi to people, looking people in the eye, wanting to play with other kids," Osiseck said. "It’s terrifying because every other child around you, you can see, are very obviously able to communicate needs, concerns, [when] they’re hurt."
Osiseck noticed positive strides within the first few weeks of placement at Waban for both Anastasia and Bjorn. She said any self-harming behaviors became few and far between and the communication barriers slowly started to fade. Osiseck firmly believes her children wouldn't be thriving without Waban and the center. She said the work [Waban's special education director Brianne] Westman and others do is transforming lives and is a game-changer for families.

Medical Motherhood is a weekly newsletter giving those raising disabled children the news and information they need to navigate complex systems. Get it delivered to your inbox each Sunday morning or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

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Do you have a question about raising disabled kids that no one seems to be able to answer? Ask me and it may become a future issue.

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Beyond the ‘Unseen’ documentary…