What if Medical Mamas Went on Strike?

Plus: Could an expanded definition of disability hurt services? Read the news roundup for the week of Nov. 12

We’ve all heard of moms going on strike, right? On sitcoms, the dads and kids step up (or don’t). But medical mamas (and papas) don’t have that option. Our kids will starve, hurt themselves or be traumatized if we stop work. Especially as the paid parent caregiver movement heats up, one wonders: How does this labor movement make progress?

On the second Sunday of every month, we feature Where is the Manual for This?!, an editorial cartoon about the medical mom life from Lenore Eklund.

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Medical Motherhood’s news roundup

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

• From the Los Angeles Times: “Californians who need help paying for ’round-the-clock home care are stuck on a state waitlist”

Nine months after giving birth, Caitlin Martin is still waiting to bring her son home from the hospital.

Her son Connor uses a feeding tube and relies on a tracheostomy and a ventilator to breathe. He was born with a rare birth defect called an omphalocele, which means some of his organs sit in a sac outside his body. Surgeons will eventually fix it, but only after a few years when he has grown bigger.

Martin, who has been coming every day to the neonatal intensive care unit at Children’s Hospital of Orange County to help care for Connor, is eager to bring him home to Anaheim.

But she also fears there will be scant help for her and her husband when that happens, driving them to exhaustion and possibly putting Connor at risk.

[…]As of September, more than 3,000 state residents were waiting for an HCBA waiver. Some have been stuck in hospitals or nursing facilities, advocates say. Other families have cobbled together enough care at home for their loved ones but can end up dangerously exhausted or financially strained.

[…]Martin is a registered nurse and plans to put her career on hold to handle much of her son’s care at home, but her husband works during the day, and “we have to sleep at some point,” she said. She fears Connor could disconnect his ventilator without anyone realizing it because the tracheostomy prevents his cries from being heard.

“Somebody has to be awake with him,” she said. “In my nursing brain, it’s a safety concern.”

Martin is infuriated by the fact that Medi-Cal, the state’s Medicaid program, will readily pay for baby Connor to be in a nursing facility, but not at “home where we know he’s going to thrive best and is actually the least costly for the state.”

“It’s just crazy to me that that’s how broken our system is,” she said.

[…]Disability rights and caregiving advocates also stress that most people prefer to be cared for at home. The Supreme Court ruled decades ago that unnecessarily institutionalizing people who can be served in their communities violates the Americans With Disabilities Act.

The problem is that “we have an institutional bias in our healthcare spending,” said Jennifer McLelland, an advocate with Little Lobbyists, which represents the needs of medically complex children. “The state will pay for costly institutional care automatically — but it only pays for cost-effective home care as an optional service. That’s the opposite of what we should be doing.” […]

• From the CBC (Canada): “Some parents consider placing kids with disabilities in care due to poor support system: B.C. representative”

British Columbia's children's representative says some parents are facing what she calls the "gut-wrenching'' decision of whether to place their children with disabilities in government care, so they can get access to better support.

Jennifer Charlesworth said services and supports for families of children with disabilities in B.C. continue to be under-resourced, difficult to navigate, and filled with lengthy waitlists that leave tens of thousands without help.

She said they are being pushed to make a difficult choice because children with disabilities who are in foster care have an array of additional services and support available to them.

"Parents [are] in that gut-wrenching place of trying to decide what's best for their child, or simply they've been walked to the ledge and they just have nothing else to give. So they feel like it's the only safe place for their child to be,'' she said at a news conference Thursday.

A report released by Charlesworth's office said a government promise to revamp supports for children with disabilities appears to be stalled as families continue to struggle.

Her office said 14 per cent of 759 people who responded to a survey said they had considered placing their child with disabilities in care under a special-needs voluntary care agreement to get the services and supports they require.

Fourteen of the 68 people who reported placing their child in care said they did so only to get services and supports for them. […]

• From Public Discourse (opinion): “The Curious Rise in Disability: How Changing Language Alters the Nature of Reality”

My son is blind, immobile, nonverbal, and hearing-impaired, with multiple brain abnormalities and complex orofacial birth defects. Is he disabled? It depends on whom you ask.

According to Pew Research, thirteen percent of all Americans are disabled. However, the CDC considers more than twenty-five percent of all Americans as disabled, including seventeen percent of children. In contrast, the National Survey of Child Health considers just over four percent of American children to be disabled. These statistics represent alternate realities.

What is the reason for this wide disparity? Some definitions of disability are limited to activities of daily living, or ADLs, such as eating, walking, bathing, and toileting. Others are broader, including behavioral, mental health, and sensory impairments. While disabilities have increased for all Americans, children, in particular, have experienced a huge rise in disability. An NIH study uses the capacious “developmental disabilities” category for its analysis, incorporating recent rises in ADHD, autism, and learning disabilities, making up a majority of new inclusions.

[…]Our government currently uses three models to define disability for both adults and children[: the ‘medical’ model, the ‘social’ model and what I’ll call the ‘equity’ model]. The state categorizes human interactions and experiences of disability in definitions that both create and support a bureaucratic process. Language changes reality.

[…]The medical model, true to its name, views disability as a purely physiological issue to be handled within the bounds of the medical system. This is the oldest operative view of disability, with origins in the scientific model of medicine that began in the nineteenth century. Under the medical or pathological model, disability is primarily a disease, diagnosed by a physician, subsequently necessitating medical intervention to alleviate, manage, or cure. One cannot be both healthy and disabled. Under the medical model, disability is a function of the body, limited to the individual experience.

[…]The social model of disability was introduced in the 1960s as advocates for the disabled preferred a more holistic approach to understanding disability. It stands in contrast to the limited medical model that many felt was discriminatory. Proponents of disability rights pushed back against the idea that disability was a disease to be cured, and instead advocated a definition of disability that recognized the relationships between individuals and society.

[…]The social model of disability centers on the individual’s relationship to society, not the individual himself or his biological reality. On one webpage, the CDC defines disability as an “interaction with various barriers [that] may hinder . . . full and effective participation in society on an equal basis with others.” Disability is now a function of one’s social environment, not just how one functions within one’s social environment.

Disability has moved from a biophysical to a psychosocial marker, increasing those under disability’s umbrella. And yet another change looms on the horizon, as a recent press release from the NIH has redefined disability yet again.

[…]The NIH recently proposed a change to its mission statement, seeking to remove the phrase “reduce illness and disability” and replace it with “optimize health and prevent or reduce illness for all people.” This proposed change effectively erases the category of disability, replacing “disabled” with “all people.” In conjunction with a recent call for research proposals, the NIH’s changing language around disability has simultaneously erased the category of disability and applied disability to every underprivileged group.

In a recent press release, the NIH defined the disabled as “persons with unequal health disparities” and “racial and ethnic minority groups, people with lower socioeconomic status, underserved rural communities, and sexual and gender minority groups.”

[…]What are the repercussions of changing and expanding definitions of disability, and how do they affect families attempting to access a limited pool of government resources? Record government spending has repercussions; Medicaid and Medicare spending is projected to double by 2032, rising to $2.7 trillion from $1.4 trillion in 2021, even while our tax base shrinks due to population decline. Disabled individuals may find themselves caught between definitions as the state uses the medical, social, and equity models of disability to determine program eligibility.

When my son, David, was denied Medicaid after a lengthy application process begun at birth, our denial letter stated that although he met the medical disability requirements to receive services—he is medically disabled by the state’s own admission—the state would not admit that he was disabled enough to receive services. Following the social model, Medicaid determined that David’s experience of his disability was lessened due to his home environment, citing a two-parent household and a flexibly employed mother as evidence. A child with obvious, severe physical disabilities was denied services for which he medically qualifies based on the state’s assessment of the child’s social environment.

[…]Our experience with this complex web of contradictory information and confounding factors is far from unique to our family. David’s struggle to qualify for Medicaid despite the expanding definition of disability shows that there is a chronic issue with our government’s over-promising solutions and under-delivering. For children, this is particularly problematic.

[…]Disabled children and adults die in my state without ever accessing services to which they are legally entitled. Changing and expanding language around disability has done little to assist these needy children and adults.

[…]The lives of my disabled brothers and sisters, my poor neighbors, the sick, the prisoner, the widow, and the orphan must be shared. But to share the burden, I must first recognize without word games the reality of disability, as well as the other myriad problems facing my community. Perhaps then can real policy solutions be enacted to bring about real change.

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