Nov 6 • 18M

Feds unveil a national strategy for family caregiver support

Just in time for National Family Caregiver Month

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Shasta Kearns Moore
News, essays and insights on the experience of raising disabled children. Sign up for our free weekly newsletter at MedicalMotherhood.com.
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A man in a hard hat and construction vest reads his phone. Chat bubbles in gray and green read: “You need to get here NOW!” “Where are you? What happened?” “ER at St. Luke’s. Josh had another seizure. Doing tests.” “On my way.” In the bottom right corner is #caregivinghappens, In the top right corner is the logo for the Caregiver Action Network.
A social media post from Caregiver Action Network, a nonprofit that leads National Family Caregivers Month. This year’s theme is #caregivinghappens to bring awareness to the fact that caregivers are often juggling that role with many other obligations. source

Do you smell that, dear reader? Change is in the air.

And no, I don’t mean the changing of the seasons.

For the first time ever, the federal government has collected together the constellation of programs it offers to family caregivers in an attempt to actually coordinate its approach to the needs of this group.

The National Strategy to Support Family Caregivers, released Sept. 21, has 345 actions across 15 federal agencies to “support family caregivers’ health, well-being and financial security.”

This comes on the heels of the Maternal and Child Health Bureau’s Blueprint for Change that I reported on in August (see link below). That was also a first-time-ever culmination of years of study on how to better address the needs of disabled children and those who are caring for them.

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Taken together, I’m hoping these initiatives point to a sea change for how parents raising children with chronic health needs are treated and supported in this country. If so, a generation of disabled children could grow up with the resources and care that they need — not just to survive but thrive.

One of the National Strategy to Support Family Caregivers’ primary goals is to increase the number of people who recognize themselves as family caregivers. Well — as the young people say nowadays — consider me influenced. Though it is clear in the report that the stereotypical family caregiver is an older adult caring for an elderly relative, parents of disabled and neurodivergent children are included and should also claim that label and claim their space in these conversations. The feds define a family caregiver as: “an adult family member or other individual who has a significant relationship with, and who provides a broad range of assistance to, an individual with a chronic or other health condition, disability or functional limitation.”

So: I am a family caregiver. Just in time, too, because it turns out it is also National Family Caregivers Month. Spearheaded by the nonprofit Caregiver Action Network, this has happened every November since the Clinton Administration, but it’s the first time I’ve heard of it.

In proclaiming this month National Family Caregivers Month, President Joe Biden said: “The truth is, at some point in our lives, each of us will likely need to be a family caregiver — but the burden falls especially hard on those who cannot afford support.  Women, people of color, and immigrants shoulder a disproportionate share of the obligation, sometimes forced to leave good jobs to instead provide care.  Their work is a profound service to their families and to our Nation, but they are still too often unseen, undervalued, and unpaid.”

Ain’t that the truth.

The Administration for Community Living estimates that lost income due to family caregiving is $522 billion (with a ‘B’) per year. It also says that replacing it with paid services would cost $470 billion every year. (In my mind, that is purely a thought experiment because I don’t believe third-party caregiving will ever, nor should ever, completely replace family.)

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The Strategy’s authors seem to agree with that, too, by pointing out how supporting family caregivers saves taxpayer money — not to mention human misery.

“When the challenges become overwhelming and family caregivers no longer can provide support, the people they care for often are left with no choices except moving to nursing homes and other institutions or to foster care — the cost of which is typically borne by taxpayers,” reads ACL’s press release announcing the Strategy.

The Strategy is the product of two new federal bodies formed in 2019. These are the RAISE (Recognize, Assist, Include, Support and Engage) Family Caregiving Advisory Council and the Advisory Council to Support Grandparents Raising Grandchildren. They first started by asking federal agencies to tell them about any programs they had that were aimed at supporting family caregivers. Once this accounting was done, the federal agencies looked at each other’s lists and tried to figure out how they could collaborate or what they could do to more directly support family caregivers.

The Strategy is the list of what the feds think they can do. Happily, these are not vague assertions of how great it would be if someone did something but include several specific policy recommendations, including:

  • Allow family caregivers who leave the workforce for caregiving to accrue Social Security credits to qualify for Social Security benefits

  • Allow kin and grandparent caregivers who have primary responsibility for a child to claim the federal Child Tax Credit

  • Include family caregiver out-of-pocket care expenses (products and services) as medical expenses eligible for tax credits

  • Create incentives for health care systems to incorporate family caregivers into health care decision making for the person receiving care

Though a big bolded quote across the top of page 17 points out most caregiving stressors involve money and asks why family caregivers aren’t paid, I could not find a recommendation to do so. I could have missed it among the nearly 350 recommendations but in many places “family caregiver” was juxtaposed with “paid long-term services and support” as if they are distinct groups.

Bolded text outlined in blue reads: “From our Listening Sessions. “One of the big stressors was money. Why aren’t we paying our family caregivers? Why aren’t we giving them a wage? When you think about any stressor they’re having…a lot of it’s going to be financially related.”
A snapshot of the top of Page 17 of the National Strategy for Family Caregiving.

But the Strategy is accepting public comments now through Nov. 30. That means you can tell them what you think the United States could be doing to better “recognize, assist, include, support and engage” family caregivers.

My comments will include some of my drumbeats: Simplify services. Allow parent caregivers to be paid. Acknowledge that the enormous web of services creates a confusing and inefficient system for the end user to navigate and that control over services should be firmly in the hands of the recipient or their guardian.

Perhaps then all the good intentions behind these programs can mean something in the daily lives of those who are just trying to get through the day.

As the President said: “Family caregivers are the backbone of our Nation’s long-term care system, doing essential work with devotion, often at great emotional and financial cost. We owe them. It is time to bring their service out of the shadows and celebrate and support them in living their own happy, healthy, and fulfilling lives.”

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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 The Colorado Sun: “Medicaid denials for Colorado children with severe disabilities set off “sheer panic” among parents

Parents of children with medical needs so severe they need round-the-clock nursing care at home are in “sheer panic” as the state Medicaid program notified them this fall that their services have been denied or reduced. 

At least 20 families have hired legal counsel to fight the denials and about 150 people attended a Medicaid children with disabilities meeting to discuss the denial letters, which were received during the past few weeks. 

[…]The denials, which are sent to families by a state contractor called Kepro, are filled with “glaring errors,” including no notice that state regulation requires that services must stay in place for 60 days after a denial, [Denver attorney Jack Robinson] said. The letters do not even include a date when services will end, Robinson said. 

This month’s turmoil is the latest point of frustration for Medicaid recipients after the department’s switch to the new contractor last year. Kepro, a national company, handles prior-authorization requests submitted by home health providers and agencies that supply private-duty nurses. Earlier this year, after a high number of denials for home-health services, Medicaid officials put the requirement for prior authorization on hold for those services. But prior authorization has been required for private-duty nursing since November.

Families say the vagueness of the denial letters has contributed to their panic, with many worried that their in-home nurses will quit for fear they won’t get paid or that families might end up owing the state Medicaid division money. 

In an emailed announcement Wednesday, the state Medicaid department said it was initiating a “temporary administrative approval process” through Dec. 31 for children who receive private-duty nursing benefits. The action means that families that received denial notices will still have services until Dec. 31.

• From The New York Times: “‘This Is Our March 2020’: Children’s Hospitals Are Overwhelmed by R.S.V.

A pediatrician in Mount Zion, Ill., sent a video of a 6-month-old named Natalie to a colleague for advice: The infant’s belly was puffing and retracting with every pant as she struggled to breathe, her nostrils flaring and bubbles forming on her lips.

Like dozens of Dr. Caitlyn Berg’s patients in recent weeks, Natalie was infected with respiratory syncytial virus, known as R.S.V. But the nearest hospital had no pediatric intensive care unit, and the one in Springfield — almost an hour west — was completely full.

For Dr. Berg, this case was personal: Natalie is her daughter.

“I try to separate my doctor brain from my mom brain,” she said. “But watching her breathe, I was terrified.”

A drastic and unusually early spike in R.S.V., a respiratory infection that impedes airways, is overwhelming pediatric units across the United States, bringing long waits for treatment and prompting hospital systems to rearrange staffing and resources to meet the demand.

“Every children’s hospital that I’m aware of is absolutely swamped,” said Dr. Coleen Cunningham, the pediatrician in chief at Children’s Hospital of Orange County, a 334-bed facility in Southern California that is so full that children are being treated right in the emergency room as they wait for inpatient beds — sometimes for more than 24 hours.

R.S.V. is a common seasonal infection, and the vast majority of cases are very mild. But this year, the number of children falling ill — and seriously ill — is significantly greater than usual. Doctors suspect that those who would ordinarily have been exposed to R.S.V. over the last couple of years were insulated from it by social distancing measures and are now driving up the numbers.

[…]The onslaught of cases is coinciding with the seasonal burst of other respiratory viruses like rhinoviruses and influenza, plus the ongoing burden of Covid. It is particularly challenging in regions where pediatric units have shrunk or have even been shuttered in recent years, creating bottlenecks in emergency rooms and shifting the strain to children’s hospitals that focus on specialized services like cancer treatment or heart surgery.

Doctors and public health experts are encouraging parents to do whatever they can to protect their children’s health in other ways (such as getting flu shots and Covid boosters) since there is no widely available vaccine for R.S.V.

• From Disability Scoop: “Feds Raise Red Flags About Delayed Special Ed Evaluations, Other IDEA Violations

New guidance warns that children suspected of having disabilities are waiting too long for evaluations and special education services are not being fully implemented for some young kids in accordance with the Individuals with Disabilities Education Act.

In a joint letter, the U.S. Department of Education’s Office of Special Education Programs and the Department of Health and Human Services’ Office of Head Start are calling out state and local special education directors and Head Start programs for problems that they say have escalated since the COVID-19 pandemic.

“The departments acknowledge that the pandemic continues to present challenges to implementing appropriate programs and services for young children. Further, opportunities for some young children with disabilities to participate in inclusive early childhood settings have been more limited. However, OSEP and OHS want to emphasize that, notwithstanding these challenges, children with disabilities retain their rights under IDEA to receive appropriate special education and related services in accordance with their individualized education programs (IEP),” reads the letter sent last month from Valerie C. Williams, director of the Education Department’s Office of Special Education Programs, and Katie Hamm, acting director of the Office of Head Start at HHS.


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