Medical Motherhood
Medical Motherhood
Paid family caregivers should be a national policy

Paid family caregivers should be a national policy

Biden's executive order doesn't go far enough for families who need this support and calls are growing across the nation for paid family caregiver programs
President Joe Biden in aviator sunglasses and a blue suit delivers a speech in the rose garden with American flags in the background and two microphones in the foreground.
President Biden delivering an address in the Rose Garden April 18 just before signing the Executive Order on Increasing Access to High Quality Care and Supporting Caregivers. This screenshot was taken from the PBS News Hour stream.

On Tuesday, President Joe Biden signed an executive order that he called “the most comprehensive set of actions any administration has taken to date” to increase access to childcare and to the home-care industry. Biden, speaking to a crowd of union members, politicians, disabled people and their families in a sunny Rose Garden ceremony, called the new effort “fundamental to who we are as a nation.”

Biden’s action comes as a flurry of activity is happening on the national scene to promote the use of paid family caregivers. Many family caregivers across the country are dreading the May 11 end of the federal public health emergency, which in many states temporarily allowed the Medicaid client’s “legal representative” to also be the paid care worker. This allowed parents — but also spouses and other kin — of children and adults receiving Medicaid’s Home and Community-Based Services (HCBS) to be paid for the labor they were already doing to care for their disabled family member.

Idaho medical parent Nathan Hill has started a nationally focused Facebook group on the issue: “CMS Keep Parents & Spouses As Paid Caregivers For Those With Disabilities” with more than 600 members at the time of this writing. Hill also wrote a a petition calling for the federal government to take urgent action to prevent the loss of this support to these families.

Unfortunately, President Biden’s order does not include specific language around paying family caregivers. The closest it gets is stressing the need to bolster the workforce and improve the supply of care. In Section 2 of the order, this translates to raising pay rates to retain and attract care workers, something the President called out specifically in his Rose Garden speech.

The more than 50 directives in Biden’s executive order are a long-overdue and important expansion of the care economy. They align closely with the Administration’s National Strategy for Family Caregiving, released last fall, which had more than 300 recommendations across 15 federal agencies to increase access to care and support using existing resources.

Read more in last November’s issue:
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The April 18 executive order will add the force of law to some of those recommendations. There could be improved access to stipends and telehealth psychotherapy for veterans’ caregivers, for example. However, much of the language in the order appears to be vague calls for studying or encouraging, rather than requirements for specific actions. The order includes:

  •        Studying the home care workforce availability, pay rates and benefits to expand access;

  •        Taking “steps” to ensure hospitals are informing family caregivers of options like HCBS and involving them in discharge planning;

  •        Looking at requiring federal contractors to offer childcare options and paid caregiving leave for their workers;

  •        And “prioritizing engagement” with parents, relatives, disabled people and other stakeholders to make “delivery and design of Federal care assistance and programs work better” for folks.

Overall, the executive order focuses on expanding access to care and support services and improving the quality of care. While it does not include direct provisions for paying family caregivers, it does aim to support the care workforce and make care more affordable and accessible for all individuals and families.

But for many who find that paid family caregiving is part of the web of support they need to live full, productive lives in their communities, this does not go far enough.

Fortunately, many states are stepping into the gap. Team Select Home Care — a national agency supporting paid family caregivers — says eight states are looking at adopting a family Certified Nursing Assistant model. The Florida Senate and House each have bills, as do New Jersey’s Senate and Assembly, and Montana’s House. Massachusetts might just do a rule change and Washington will conduct a legislative study on the model. Texas’ House and Senate, Connecticut’s House and Maine’s Legislature are all looking at this model. That is in addition to the six that already provide this type of option: Colorado, Arizona, New Hampshire, Pennsylvania, Indiana and California.

This does not include states that have or are looking at a non-CNA model. My home state of Oregon, for example, is likely to pass Senate Bill 91, which would create a permanent program for paid family caregivers for attendant care hours with extra training requirements but no certification.

Read more on Oregon’s effort:
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This does not need to be a piecemeal, state-by-state solution. In their November 2022 “Strengthening the HCBS Ecosystem” report, the National Council on Disability recommended that the temporary programs allowing for paid family caregivers during the public health emergency continue on.

Unpaid family caregivers have been a constant part of the HCBS ecosystem, keeping loved ones cared for but not being paid to do so, causing impoverishment and a lack of respite, among other things. Medicaid authorities, such as state plan services and waivers, were utilized to pay family caregivers, preventing further spread of the virus, alleviating the direct care workforce crisis, and helping families maintain some income. These flexibilities should remain permanently—family caregivers should be paid, and CMS should make this a permanent [option] to support the nation’s need for a strong HCBS system. [pg 68]

We need a national program and national guidance. President Biden’s next executive order on this topic should be a declaration of a public health emergency recognizing the need for paid family care providers during this post-pandemic period where care workers and in-home nurses are even less available than they were before COVID-19. For more than two years, we have proven the success of a paid family caregiver program. Can we please just keep it going?


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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 This Is Reno (opinion): “Support for Senate Bill 158 will help Nevada children

[…]the abuse of disabled children in schools is a real problem. 

For example, a lawsuit was made in Clark County School District involving the sexual abuse of two disabled preschoolers and was settled for $9 million. Another case involving criminal negligence by an educator and battery by other students in Washoe County settled for $4 million. A more recent case filed in February about the repeated physical abuse of a toddler by an educator is ongoing. 

These cases only represent a small fraction of the abuse happening to disabled children in schools. The majority of these cases go unreported, providing no justice for Nevada’s disabled youth and their parents.

Senate Bill 158 requires each school district to install surveillance cameras in each classroom that is used for special education classes. The cameras must also be capable of recording sound. To protect the privacy of special education students and teachers, a consent form outlining all aspects of the use of video cameras must be signed. Following written consent, a written notice is to be provided in every entrance to a classroom that is required to be recorded. 

According to the bill, the video cameras are to only be used during regular school hours. The principal is also required to provide extensive training to any employee that will have access to the recordings. To protect the confidentiality of these recordings, they are only to be accessed in cases of legal proceedings, criminal proceedings, in response to a subpoena, or to check the proper function of the cameras. 

• From The Dallas Morning News: “Private schools for whom? Special needs students caught in Texas’ school choice debate

[…]As the Texas Legislature debates a voucher-like program that would give families public funds to help pay for private school, supporters face an uphill battle in the House. Republican proponents are pitching a number of paths forward with specific cutouts that could win over skeptics. Among them is a narrow option that would provide education savings accounts only to students like those at Notre Dame School — children with special needs.

Based on the testimony, “there’s definitely children who need that specialized care and the financial burden shouldn’t be what keeps them from getting a good education,” said Rep. Jacey Jetton, R-Richmond.

Children with disabilities are central in a fierce debate over any school voucher program. Roughly 13% of Texas public school students receive special education services.

While campuses such as Notre Dame exist specifically to serve those with developmental disabilities, private schools in general can deny admission to students, including those with special needs.

Public schools, meanwhile, are required to serve every child.

Families seeking programs like Notre Dame — many of whom have tried public school and found it unable to best serve their kids — could benefit from an $8,000 education savings account as proposed in legislation, officials say. […]

• From The Independent (United Kingdom): “Call for urgent measures to prevent ‘appalling’ abuse of disabled children in UK care homes

Recommendations for a more joined-up approach to the care of disabled children in care homes must be fully implemented otherwise “appalling harm” suffered by this vulnerable group could be repeated, experts have warned.

Health and education watchdogs should carry out joint inspections of residential settings and urgent training must take place on the use of physical restraints, the Child Safeguarding Practice Review Panel said.

It has made nine recommendations to government departments, inspectorates and NHS England, as it published its latest report on protecting children with disabilities and complex health needs from abuse in these settings.

The phase two report, published on Thursday, follows a review in October which found a culture of abuse and harm, including evidence of physical abuse, violence, neglect, emotional abuse and sexual harm.

[…] Placing children into settings at a distance from family and friends “should be seen as a risk factor in planning”, the panel said, stating that if this is considered the best option “mechanisms must be in place as part of the child’s plan to support regular contact between children and their families”.

[…]The Local government Association said the recommendations should be “an urgent call to action for the entire sector” and asked for councils to be given additional powers to hold local partners, including health organisations and schools, to account for their role in supporting children with specific needs.[…]

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