Jun 26 • 16M

Our caregiver conversation on Oregon Public Broadcasting shows the need for true supports

The June 22 Think Out Loud panel discussion outlined many systemic issues

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“It’s hard because you want to give advice to people on an individual level but it’s a systematic issue.”— Sabine Wilson, caregiver

Medical Motherhood subscribers! These conversations are breaking into the mainstream. This week, Oregon Public Broadcasting’s Think Out Loud aired an episode all about in-home caregiving. You may recognize the first guest… it was me!

The episode was actually recorded a few weeks ago in front of a live Zoom audience, which made for a great conversation with the audience, most of which occurred in the chat, so it was interesting for me to listen back to this as, well, I admit I hadn’t been paying full attention to some of the other speakers.

For accessibility, I’m going to distill some of the key points here but podcast listeners should check out the full show at this link or in their favorite podcast streaming service.

Longtime radio host Alison Frost put together the panel of five people in the caregiving world. Going into the show, I really felt like I wanted its broad audience to understand how what has been going on in the wider world during the pandemic is related to what disabled people and their families had been living already.

Frost started out asking me what my sons’ needs are:

“It’s (all) day long. It involves tube feeding and all of the personal hygiene things,” I said. “But, really, we’ve managed to structure our lives so that it’s just another need. It’s not a ‘special’ need.”

We referenced many past issues of Medical Motherhood, such as the stories of Carly and Cyndy. (By the way, please send strength to Cyndy right now as her daughter passed away this week. You can do that on Facebook.)

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We also talked about the movement to continue to allow parent-caregivers of minor children to be paid in Oregon.

“The family is a unit, right?” I said. “So if you pay for the labor that parents are already doing — because they can’t work outside of the home due to these needs — it really lifts up the whole system and allows for children’s lives to be better.”

The next speaker, Susan Hedlund of the Knight Cancer Institute, said it would be expensive to pay all the unpaid caregivers in the country — which she put at 52 million. Hedlund went on to cite statistics about how detrimental caregiving is to mental and physical health. She said 63 percent of elderly caregivers die earlier than their peers. For younger caregivers, the rates of early death are around 40-50 percent. She said that is why it’s important for families to get support — including outside caregiver help.

I agree that we need a quality workforce of awesome caregivers, but I quibble with the idea that it would be more expensive to pay family caregivers when the costs of not paying them are so high.

“Yes, it will actually cost money to fulfill Oregon’s promise to its disabled children for these in-home caregiver hours,” I said. “Right now they are balancing the books on the backs of unpaid, mostly parents, who are doing this labor. They have already assessed our children and found that their needs are many hours per week more than a typical child their age and yet about half of those hours are unused. And I know anecdotally from the community that the ones that are used are (usually) other relatives — non-parent caregivers — because it’s very difficult to find quality caregivers. And I’m lucky to have the ones that I have and I’m lucky to have the family members that I have. But those needs exist. And they exist at 3 a.m. and they exist on weekends and they exist on holidays and there is somebody who is doing that work and I think that we should pay them to do it.”

Frost asked me if there are hopeful signs from the Oregon legislature.

“Democracy is a slow and messy process, right?” I said. “So, it was very nice when — like I said — everybody was experiencing a public health emergency. All the sudden, the solutions were really clear. You know, let’s get rid of all this red tape, let’s make work from home easier, let’s have all this flexibility. Suddenly when it’s you and your life, it makes sense to have all these freedoms but when it’s those people over there it’s different.

“[…]I had a lot of hope that our global collective experience of a new normal was going to have a lot of change in people’s minds and hearts about what’s needed to have a truly inclusive society. To have those schools that are designed for everybody, to have those government services truly support the people that they intend to serve. What I’ve seen is that a lot of people are kind of clinging to the old normal. And I get it. I went through that too with our personal health emergency and it’s not easy and it’s scary. But what I can tell you from being on the other side of that is that there is a whole world of possibilities you didn’t even know existed. There are so many ways for our services to be designed better and we just have to be willing to accept the new normal.”

Sabine Wilson, a writer from Lincoln City, then talked about her experience trying to get signed up as a caregiver for her boyfriend’s sister. It was a nearly 6-month process that eventually ended when she was able to ditch the county process and sign up through an agency.

The delay was “not from lack of trying,” Wilson said, “but it was a lot of back and forth with this bureaucratic system that kind of values the procedure over helping the families that they are supposed provide help for, in a world that was not built for families like ours, in a world that was not built for people with disabilities. It’s already hard enough finding the resources that we needed to be the best care providers that we could while also taking care of ourselves and the system was just a lot of back and forth, unreturned phone calls, emails pointing me in different directions, back and forth and it was just incredibly frustrating. I started off with a lot of drive and ended feeling really defeated.”

She said the only advice she had to others was not to quit the process because they deserve to be paid for their labor.

“It’s hard because you want to give advice to people on an individual level but it’s a systematic issue,” Wilson said.

Susan Biel, who takes care of her aging mother in Northeast Portland, said the adjustment was difficult as she didn’t previously know anyone who was a caregiver.

“We both had to learn how to navigate without me being too helpful or having too high of expectations,” she said. Biel is on Social Security Disability Insurance herself for multiple sclerosis, which typically means a person cannot be paid for their labor without jeopardizing their benefits.

She said she felt overwhelmed by the amount of information on the internet and so appreciated a course called Powerful Tools for Caregivers.

The co-founder of that program is from Portland, Oregon, and was also on the show. Leslie Congleton said researchers have found the six-week course, either in-person or virtual, has four major benefits: increases a caregiver’s sense of self-efficacy, their commitment to self-care, their use of community resources and their management of challenging emotions.

But Congleton also said that with one in five people being caregivers, the demand for support is great.

“We could never have enough programs like Powerful Tools for Caregivers to meet the needs,” she said.

Personally, I think the right supports are possible, as long as we keep having conversations like these.


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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 Disability Scoop: “Across US, Special Education Enrollment On The Rise

The number of students with disabilities in the nation’s public schools is growing, according to new federal data.

There were 7.2 million students ages 3 to 21 served under the Individuals with Disabilities Education Act during the 2020-2021 academic year, accounting for 15% of all students.

That’s up from the 2009-2010 school year when 6.5 million children were served under IDEA, representing 13% of public school students.

[…]Of those with disabilities during the 2020-2021 school year, the most common diagnosis was specific learning disability, which affected a third of students served under IDEA, followed by speech or language impairment and a classification known as “other health impairment.”

Autism affected 12% of students with disabilities, while 7% had developmental delay, 6% had intellectual disability and 2% had multiple disabilities.

• From The U.S. Department of Justice (press release): “Justice Department Finds Maine in Violation of ADA For Over-Institutionalization of Children with Disabilities

On the 23rd anniversary of the landmark Supreme Court decision in Olmstead v. L.C., the Department of Justice announced today that it has concluded that Maine unnecessarily segregates children with mental health and/or developmental disabilities, in psychiatric hospitals, residential treatment facilities, and a state-operated juvenile detention facility. The Olmstead decision held that people with disabilities have a right to live and receive services in the most integrated setting appropriate to their needs — typically in their homes and communities instead of in institutions.

Disability Rights Maine, the protection and advocacy agency for people with disabilities in Maine, filed a complaint with the department on behalf of a group of children with disabilities, alleging that these children cannot access needed community-based services, resulting in their institutionalization or risk of institutionalization in violation of the Americans with Disabilities Act (ADA) and the Supreme Court’s decision in Olmstead. The department’s findings, detailed in a letter to Maine Governor Janet Mills and Attorney General Aaron Frey, follow a thorough investigation into the complaint and the State’s system of care for children with behavioral health needs.

• From the China Internet Information Center: “Across China: Special education brightens life of children with disabilities

[…]China's regulation on education for the disabled requires access to nine-year compulsory education for all school-age children and adolescents with disabilities. No schools are allowed to decline their appeal for schooling. The requirement was simplified as "full coverage and zero rejection."

"From 2016 to 2020, we implemented two special education upgrading plans, setting up special education schools in all counties and districts with a population of more than 300,000," said Shen Jianling, director of the Tianshui municipal education bureau.

By the end of 2020, the enrollment rate of compulsory education for children and adolescents with disabilities in Gansu Province reached 96.81 percent, and there were 44 special education schools for compulsory education.

[…]In January, China's Ministry of Education, together with relevant authorities, released an action plan to boost the development of special needs education, with the aim of reaching a 97 percent enrollment rate for school-age minors with disabilities in compulsory education by 2025.

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