NCARF
Advocacy Newsletter
November 12, 2021
Advocacy Newsletter: 11/12/2021
Intro:
This week we received the news we have all been waiting for in NC, the budget will be voted on next week. Keeping with the budget theme, it looks like Build Back Better may also get a House vote soon. Meanwhile, on legal watch, we witnessed multiple states file lawsuits against the Department of Labor/OSHA and CMS vaccine mandates. There is a lot to dig into, so let’s do it!
In This Issue:
- Federal Update: Build Back Better to Move Forward
- NC General Assembly Update: Get Ready for the Budget
- NC Medicaid Update: Webinar: Managed Care Update, Healthy Opportunities, 1115 waiver.
- NC Medicaid Bulletins
- Vaccination Mandate Updates: CMS/DOL-OSHA Lawsuits
- NC News You Can Use
- National News You Can Use
Federal Update:
At the end of last week, it appeared that Speaker Pelosi would like to move on the Build Back Better vote before Thanksgiving break. One possible issue is the Congressional Budget Office cautioning Democrats that they may not have the CBO score for the bill completed before legislative session gets going this week.
“The Congressional Budget Office is in the process of preparing a cost estimate for the current version of H.R. 5376, the Build Back Better Act (Rules Committee Print 117-18 incorporating a manager’s amendment by Congressman Yarmuth). Over the past several months, we have provided technical assistance to committees as they developed their proposals for various parts of the bill. The analysis of the bill’s many provisions is complicated, and CBO will provide a cost estimate for the entire bill as soon as practicable.
We anticipate releasing estimates for individual titles of the bill as we complete them, some of which will be released this week. Other estimates will take longer, particularly for provisions in some titles that interact with those in other titles. When we determine a release date for the cost estimate for the entire bill, we will provide advance notice.” (SOURCE)
The cost of the plan increased from $1.75 trillion to over $1.85 trillion with the addition of child tax credits.
Here are some key funding items in the proposed BBB that directly impact home and community based providers.
Here is how that $150 billion investment in Medicaid HCBS Services is distributed.
- 6% FMAP increase specifically for HCBS through September of 2031
- Maintenance of effort – new funds may only be used to supplement, not supplant current state spending on HCBS
- Required coverage of personal care services
- Support for family caregivers to include respite care
- Requires states to update and increase payment rates to support recruitment and retention of direct care workers
- Requires states to review and if necessary, increase payment rates to ensure sufficient access to care every 3 years
- Makes permanent the Medicaid Money Follows the Person demonstration program
- Makes permanent protections against spousal impoverishment for HCBS beneficiaries.
- The full legislative language here, HCBS part starts on page 568
NC Legislative Update:
Last week leadership in the House and Senate announced that they would unveil their compromise budget on Monday, November 15th. Multiple press outlets reported that the compromise budget does include some of the spending items that Governor Cooper had been discussing as his top priorities including increased teacher raise. One item that appears to not be in the compromise is Medicaid Expansion.
We will be reviewing the budget when it is released with an eye for key funding items that are critical to our home care, home health, hospice, and behavioral health providers. The House budget included increases for direct care workers and private duty nursing rates. There was also a significant investment in-home and community-based waivers for disabled adults and people with developmental disabilities. The House budget also incorporated much of the state’s American Rescue Plan to expand and innovate on how to care for more Medicaid beneficiaries in the community of their choice. That ARPA plan is at CMS waiting for full approval. We will be keeping an eye to see how much of the House health and human services budget made it to the final compromise budget.
Here is how this week could play out. If the House and Senate leadership unveil their budget on Monday, we could see chamber votes on Tuesday. A quick reminder that the compromise budget cannot be amended in either chamber. This will be a straight-up or down vote by members. The budget will then head to the Governor. Governor Cooper will have three options when the budget arrives on his desk. He can sign it, veto it, or leave it without signing it and in 10 days it would become law.
Vaccine Updates: CMS and DOL/OSHA
On November 4, 2021, we released information regarding the vaccine mandates issued by the Center for Medicare and Medicaid, as well as information regarding the Department of Labor/OSHA vaccine requirements.
As of Friday, there has been a lawsuit filed in the 5th Circuit against the Department of Labor/OSHA regulations regarding worker vaccination. This regulation applies to employers with 100+ employees and does provide for a testing option. The 5th Circuit has issued a stay on the implementation of this regulation. The Department of Labor has provided the following information regarding the issued ETS including a fact sheet About the ETSand an ETS Summary.
Additional information can be found at this FAQ.
CMS released a separate vaccine mandate ETS and as of Friday, 10 rural including Missouri, Nebraska, and Arkansas have filed a lawsuit in the U.S. District Court for the Eastern District of Missouri. The “complaint asks the court to declare the interim final rule issued last week unlawful and prohibit the administration from imposing a nationwide vaccine mandate through the Centers for Medicare & Medicaid Services (CMS).” (SOURCE)
The CMS emergency rule will apply to Intermediate Care Facilities for Individuals with Intellectual Disabilities. This emergency rule will not apply to home care providers or providers of Medicaid home and community-based services. This emergency rule will not apply to group homes. This regulation will only apply to Medicare and Medicaid-certified provider and supplier types that are subject to CMS health and safety regulations. CMS’s health and safety regulations do not cover providers of Home and Community-based services.
The emergency rule does include exemptions for staff with recognized medical conditions for which vaccines are contraindicated (as a reasonable accommodation under the Americans with Disabilities Act (ADA)) or religious beliefs, observances, or practices (established under Title VII of the Civil Rights Act of 1964).
You can visit: https://www.federalregister.gov/public-inspection/2021-23831/medicare-and-medicaid-programs-omnibus-covid-19-health-care-staff-vaccination to see the full rule.
To view a list of frequently asked questions, visit: www.cms.gov/files/document/cms-omnibus-staff-vax-requirements-2021.docx
We continue to monitor the legal challenges to these rules as well as any updated communication from either the Department of Labor, CMS, or the courts.
NC Medicaid Update:
NC Medicaid Managed Care is live with Standard Plans launching July 1, 2021. Make sure you have the latest information and resources to help you navigate managed care.
Join us Wednesday, Nov. 17, from noon to 1 p.m., to hear the latest updates on the state’s launch of NC Medicaid Managed Care, an update on the Healthy Opportunities pilots, and a review of the proposed changes to the 1115 Waiver to align the waiver with the current timeline and design. There will also be an opportunity for questions and answers.
To register for the webinar, simply click on the link below. Feel free to share the webinar invitation and registration link with other community partners you think would be interested in attending.
Updates on NC Medicaid Managed Care, Healthy Opportunities and a public hearing for the 1115 Waiver Amendment
Noon – 1 p.m., Nov. 17
Click here to register
Unable to attend? We would be happy to send you a link to the slide deck and recording of the webinar. Click the registration link, complete the registration form, and choose “I cannot attend but would like the link to the recording and slide deck”.
For more information or questions contact us at Medicaid.NCEngagement@dhhs.nc.gov
NOTE: Registration will close at 10 a.m., Nov. 17, 2021
NC Medicaid Bulletin:
SPECIAL BULLETIN COVID-19 #198: Pfizer Vaccine for 12 Years and Older
Monday, November 08, 2021
Effective with date of service Sept. 29, 2021, the Medicaid and NC Health Choice programs cover Pfizer-BioNTech COVID-19 Vaccine (12 years of age and older).
NC News You Can Use:
Budget Talk
MICHAEL HYLAND, WNCN NEWS, 11/11/21
Republicans in the General Assembly will hold votes next week on the state budget despite not reaching an agreement with Gov. Roy Cooper. It remains unclear what action Cooper will take. “I think we’ve come to a place where we’ve exhausted what we needed to talk about,” said state Rep. Jason Saine, R-Lincoln, one of the lead budget writers in the House. “There’s not been any acrimony. No one’s mad at anyone. We’ve just kind of exhausted the process.” Cooper acknowledged the negotiations with the Republicans led to more money going toward education but did not include Medicaid expansion to cover hundreds of thousands more people without health insurance. Saine said he’s confident Republicans have enough Democrats willing to vote with them in the event Cooper does veto the budget.
Rep. Billy Richardson, D-Cumberland, said he will vote in favor of the budget and has been a part of the negotiations. He supports the pay raises for state workers and teachers, which he said are close to 5 percent over two years, as well as the investments that will be made in infrastructure, funding for higher education institutions in his district, and funding for East Carolina University’s Brody School of Medicine. “This is good, commonsense budgeting. Is there everything I want in there? No,” he said, noting he thinks the state should expand Medicaid. North Carolina is one of 12 states that has not since the Affordable Care Act was passed by Congress. He said he could still support the state budget without that, not wanting to see a repeat of 2019 when no traditional budget was ever passed and signed into law.
When asked if he would vote to override a veto if Cooper issues one, Richardson said he would approach that at the time. But he added this, “If I think the Governor is being unreasonable in his approach to this and compromising and working, then yeah I’ll override him. Absolutely. Too much at stake.” Richardson said he felt like they made significant progress though, noting Democrats’ concerns about Republicans including provisions in the budget that would limit the governor’s emergency powers as well as the ability of Attorney General Josh Stein to carry out his job. “We’ve gotten a lot of those atrocious statements of limiting the power of the Governor and the Attorney General out,” Richardson said. “It’s crazy not to vote this budget in.”
He also said, and Saine confirmed, that Republicans are committing to holding more detailed discussions about expanding Medicaid during the spring session. Richardson described it as a “super committee” that will examine the issue. [Source]
Moore Plans
DAWN BAUMGARTNER VAUGHAN AND LUCILLE SHERMAN, THE NEWS & OBSERVER, DANIELLE BATTAGLIA, MCCLATCHY AND BRIAN MURPHY, THE INSIDER, 11/11/21
North Carolina House Speaker Tim Moore will not run for Congress in 2022 — the first major fallout from U.S. Rep. Madison Cawthorn’s decision to switch congressional districts. Rep. Jason Saine, R-Lincoln, the chair of the powerful Appropriations Committee, said Moore “will seek re-election as speaker,” in a text message to The News & Observer on Thursday night. Some key House Republicans were lining up behind their leader to keep his position, despite anticipation brewing for weeks that there could be a vacancy for speaker.
Moore later confirmed the news to The News & Observer with a statement via text Thursday night: “While much of the speculation about my potential congressional candidacy has been driven by the media and political pundits, I have been humbled by the folks in our region who expressed their wishes for me to represent them in Washington. While I have given it consideration, right now I am focused on the issues at hand that impact all North Carolinians,” Moore said. “I will continue to fight for my constituents, and I will work for what the state needs now — a balanced budget that cuts taxes and invests in our critical needs during these challenging times. I look forward to serving with my colleagues as Speaker of the House of Representatives and securing a supermajority for the Republicans next year,” he said.
Moore asked Saine to support him for speaker, Saine said. “I told him that he’s my speaker and has done a good job. I haven’t heard any announcement to the contrary and he continues to have my support as speaker,” said Saine, who was with Moore at a fundraiser with other lawmakers on Thursday night.
“The Speaker is being encouraged to look at Congress, but a 5th term as Speaker has always been the most likely route,” Rep. Destin Hall, R-Caldwell, the Rules Committee chairman, said in a text message to The N&O. “I expect him to stay in the state house. He will have the clear support of the House Republican caucus.” Moore told members of his caucus in individual phone calls this week that he will run for another term in the state House and asked for their support for speaker, a source close to Moore told The News & Observer on Thursday night.
Saine, Hall and House Majority Leader John Bell were among those interested in running for speaker if Moore didn’t run again, Saine confirmed. “We are interested but also support Tim — it’s not the drama one would believe,” he said. “I’m supporting Tim.”
Moore has been speaker since 2015. He was widely expected to run for the U.S. House in the newly created 13th Congressional District, which includes his home county of Cleveland. But Cawthorn, a first-term Republican who has quickly made a national name for himself, squashed those plans.
Cawthorn announced Thursday night that he would run for reelection in the 13th Congressional District and not the 14th Congressional District, where he is the lone incumbent. Cawthorn did not mention Moore by name, but he said he was worried about an “establishment” Republican prevailing in the 13th district if he did not run. “Knowing the political realities of the 13th district, I am afraid that another establishment, go-along to get-along Republican would prevail there. I will not let that happen,” Cawthorn said.
The congressional maps were approved by state lawmakers last week. The filing period for candidates to officially declare their intentions is in December. The campaign news also comes a few days ahead of what might be the final resolution of the state budget this year. Already more than four months delayed, Moore, Senate leader Phil Berger and other Republicans have been negotiating a budget with Democratic Gov. Roy Cooper. The Republican-led General Assembly is expected to reveal its conference budget and hold votes next week before sending the plan to the governor’s desk. [Source]
Leandro Order
T. KEUNG HUI, THE NEWS & OBSERVER, 11/10/21
State Superior Court Judge David Lee ruled Wednesday that North Carolina has failed to provide students with their Constitutional guarantee to a sound basic education. To remedy the violation, Lee ordered the state budget director, state treasurer and state controller to “take the necessary actions to transfer the total amount” to fund the next two years of a plan developed by an education consultant.
Lee, speaking at a court hearing in Raleigh, said that the state Constitution empowers the courts to act when the other branches of government don’t follow their constitutional obligations. He said “the court’s deference is at an end” after waiting 17 years since the last time the N.C. Supreme Court said the state wasn’t meeting its educational obligations. “The repeated failure by the state is a constitutional violation that has to be remedied,” Lee said.
Lee’s order won’t go into effect for 30 days. But even then, the money will not likely be transferred anytime soon as the leaders of the Republican-controlled General Assembly are expected to fight what they call an unconstitutional order. GOP lawmakers say the State Constitution only empowers the legislature to spend money. House Speaker Tim Moore, R-Cleveland, called Lee a “rogue judge in a press release Tuesday ahead of the decision. He also warned that the order “would amount to judicial misconduct and will be met with the strongest possible response.”
GOP lawmakers could attempt to impeach Lee. It would only require a simple majority in the House to impeach Lee, but it would take a two-thirds majority in the Senate to convict him and remove him from office. But Lee would be barred from continuing on the case until the impeachment trial was held by the Senate.
“This case has devolved into an attempt by politically allied lawyers and the Governor to enact the Governor’s preferred budget plan via court order, cutting out the legislature from its proper and constitutional role,” Moore and Senate leader Phil Berger said in a joint statement Wednesday. Moore and Berger, R-Rockingham, also say that executive branch officials, which include GOP State Treasurer Dale Folwell, “swear an oath to the Constitution, not to an unelected county-level trial judge.”
Democratic lawmakers said it’s the Republicans who are not following the state Constitution. “The reality remains that Republican leadership has thumbed its nose at the court and the judiciary,” Sen. Jay Chaudhuri, D-Wake, said at a news conference Tuesday. “Sen. Berger has argued that Judge Lee’s motion is a violation of separation of powers. “But the failure to comply with Judge Lee’s order is a real constitutional violation that separates our schoolchildren from the real chance to achieve the American Dream.”
Gov. Roy Cooper said in a written statement that “legislators can’t simply erase this right because they don’t like it. We have an effective, court-approved roadmap for making education better in North Carolina and it’s time to get it done.”
The Leandro court case was initially filed in 1994 by low-wealth school districts to get more state funding. The case is named after a student from Hoke County who has since graduated from college. Over the years, the state Supreme Court has ruled that the state Constitution guarantees every child “an opportunity to receive a sound basic education” and that the state was failing to meet that obligation.
School funding litigation in several other states has surfaced in recent years. In Washington, the Supreme Court found the legislature in contempt and issued fines against it for failing to carry out funding reforms. And a Kansas court threatened to close schools unless legislators addressed funding equity.
Lee, a retired Union County judge and registered Democrat, was assigned the case by the Supreme Court in 2016. Lee said the educational situation is getting worse now and needs to be addressed. “This case is about children who are from high-poverty, low-performing districts and areas of our state that aren’t getting a fair opportunity to get a sound basic education,” Lee said Wednesday. “Unfortunately from the numbers I have seen, the sheer number of those students has increased dramatically and continues to do so. So in that sense it’s a runway train and got to be addressed.” In June, Lee approved a 7-year plan agreed to by the State Board of Education, Democratic Gov. Roy Cooper’s administration and the plaintiffs.
The $5.6 billion plan includes things such as a 5% pay raise for teachers, more funding for low-wealth school districts and expansion of the NC Pre-K program. The new state budget is still being developed, so it’s unclear how much of the Leandro plan will be funded. But Lee has criticized lawmakers for not fully funding the first two years of the plan, around $1.7 billion, in their earlier budget proposals.
Lee said he’s going with the Leandro plan, which was developed by an education consultant and largely funded by the Cooper Administration, because the legislature hasn’t developed its own plan. Attorneys for the plaintiffs thanked Lee, saying the state’s at-risk students have no other hope for getting additional school resources without judicial action. “The Comprehensive Remedial Plan isn’t going to fix all the ills in our public education system, but it will fix the constitutional deficiencies that have been identified by the court,” said David Hinojosa, an attorney representing parents in the lawsuit.
Every Child NC, composed of advocacy groups, praised Lee’s order, adding that minority students, rural students and those learning English were among those hurt the most by school system failures: “Today is an unambiguous victory for North Carolina’s 1.5 million students, their families and the communities across the state that all benefit from strong, inclusive public schools and early education.”
Retired Superior Court Judge Howard Manning, a Republican who presided over the Leandro case for 19 years, argued that the courts don’t have the authority to order that the money be provided. In a letter Tuesday to state lawmakers and Gov. Cooper that was obtained by The Carolina Journal, Manning also blamed the state’s lack of educational progress on the “educational establishment.” “Leandro requires that the children , not the educational establishment, have the Constitutional right to the equal opportunity to obtain a sound basic education,” Manning wrote. “That has not and is not happening now as the little children are not being taught to read and write because of a failure of classroom instruction as required by Leandro.” Manning said the problem is that not every classroom has a “competent, certified, well-trained teacher.” Supporters of the court order say the Leandro plan will provide the resources schools need to hire more highly qualified teachers. [Source 1] [Source 2]
Worker Mandate
KORIE DEAN, THE NEWS & OBSERVER AND BLOOMBERG NEWS, 11/05/21
President Joe Biden’s administration announced Thursday that the U.S. Department of Labor’s Occupational Safety and Health Administration (OSHA) will require workers at companies with 100 employees or more to be vaccinated against COVID-19 or be tested on a weekly basis. The mandate will affect an estimated 84 million private-sector employees across the U.S. But North Carolina is one of the more than 25 states with its own state-run OSHA program to protect workers, and the state Department of Labor can choose how, or whether, it will implement such mandates.
The department has 15 days from Friday to respond to federal OSHA with its decision. As of Friday, the N.C. Department of Labor has not issued a decision on whether it will adopt the mandate. In a statement Thursday, Labor Commissioner Josh Dobson said the department is “reviewing the text of the rule and its potential impact on our state’s employers and will ultimately issue a response by the required date.” If North Carolina chooses not to adopt the federal ETS, or a state standard with the same level of worker protection, federal OSHA could “commence proceedings to ensure adequate protections for covered workers within the state.” That could mean reconsideration and possible revocation of the final approval status for the state’s OSHA plan, as well as federal OSHA reinstating its federal enforcement authority over portions, or all, of the state’s plan.
In a statement Thursday, N.C. Superintendent of Public Instruction Catherine Truitt said the federal OSHA mandate is “one of the clearest examples of government overreach and one of the purest attacks on personal choice.” Public school districts with 100 or more employees are included in the mandate. Truitt said the state Department of Instruction will work with the Department of Labor and Dobson as he works to “implement a plan that is right for North Carolina.” In a statement Friday, N.C. House Speaker Tim Moore called the mandate unconstitutional and said he would explore “every legal option” to fight it.
Late Friday, a federal appeals court in New Orleans temporarily halted nationwide implementation of the Biden mandate. The request to stall came from more than two dozen private companies suing the U.S. Occupational Safety and Health Administration and Labor Department, as part of a court challenge led by Texas, Louisiana, Utah and South Carolina. The New Orleans court temporarily halted the vaccine mandate while the court further considers the matter. A three-judge panel, including two Donald Trump appointees, gave the Biden administration until 5 p.m. Central time Monday to respond. [Source 1] [Source 2]
National News You Can Use:
States File Lawsuit Targeting CMS Vaccine Mandate, Cite ‘Alarming Shortage of Health Care Workers’
Home Health Care News
For the most part, home health operators covered by the Medicare Conditions of Participation (CoPs) haven’t been overly against the recently unveiled COVID-19 vaccine mandate from the U.S. Centers for Medicare & Medicaid services.
“As we sit here today, I think we have all the protocols and processes in place to manage through this and to support our workforce, as we move into a more robust vaccine environment,” LHC Group Inc. (Nasdaq: LHCG) President Joshua Proffitt said this week at the Credit Suisse Healthcare Conference.
It’s increasingly unclear if that confidence will be put to the test, however.
Missouri, Iowa and eight other states have filed a lawsuit against President Joe Biden and key administration officials over the CMS requirement that health care workers are vaccinated against COVID-19 as a condition of doing business with Medicare or Medicaid. Their nearly 60-page complaint — filed in the U.S. District Court for the Eastern District of Missouri — argues the mandate is unlawful and would hurt the 76,000 providers affected by it.
“The plaintiff states seek to end this dragooning of our states’ health care heroes,” the complaint reads. “Critically, the CMS vaccine mandate also threatens to exacerbate an alarming shortage of health care workers, particularly in rural communities, that has already reached a boiling point.”
Nebraska, Arkansas, Kansas, Wyoming, Alaska, South Dakota, North Dakota and New Hampshire are the other plaintiff states. Kansas is the only one in the group of 10 led by a Democratic governor.
“Kansas health care facilities and their employees are already facing hardships due to the stresses of the pandemic and the current labor shortage,” Kansas Attorney General Derek Schmidt said in a statement. “Placing this additional mandate on health care facilities and employees will exacerbate this problem and will likely lead some facilities – particularly those in underserved, rural areas – to close due to an inability to hire sufficient staff.”
Specific Biden administration officials named in the complaint include U.S. Department of Health & Human Services (HHS) Secretary Xavier Becerra and CMS Administrator Chiquita Brooks-LaSure, along with Meena Seshamani and Daniel Tsai, who head the Medicare and Medicaid programs, respectively.
CMS released emergency regulations related to COVID-19 vaccinations for health care workers last week. The Occupational Safety and Health Administration (OSHA) did so as well for companies that employ 100 or more workers.
Under the CMS regulations, health care providers must establish a policy ensuring all eligible staff have received the first dose of a two-dose COVID-19 vaccine, or a one-dose COVID-19 vaccine, prior to providing any care, treatment or other services by Dec. 5. Staff must be fully vaccinated by Jan. 4, 2022.
Judging from states that have already enacted mandates on their own, Biden administration officials have said they do not expect mass resignations in response to the CMS regulations.
“Where requirements have been implemented, we have not seen widespread resignations in the health care workforce,” a senior CMS official said during a White House press briefing. “In fact, we know that the requirements are an essential tool to protect patients and health care personnel.”
Proffitt echoed that idea, noting that LHC Group has not seen a mass exodus of workers in states with vaccine requirements. LHC Group delivers home health, hospice and other services across 37 states overall, employing roughly 30,000 workers.
“We track and monitor very closely leading up to the go-live of the mandate, pre- and post-, what kind of labor disruption [we] had,” Proffitt said. “And we really haven’t had any real upticks in turnover, with the exception of a little bit in the home- and community-based services (HCBS) in New York, because that workforce, you know, can go do other things.”
Even holdouts in the more clinical workforce typically opt to get vaccinated when nearing a deadline, he added.
“Once it gets to the deadline, they tend to get vaccinated,” Proffitt said. “And then kind of fall into that compliant group, or they fall under an exemption.”
The CMS mandate does not include a testing opt-out, and it applies to all health care workers, even if they’re not in a patient-facing role. Full-time telework staff are exempt.
Because they are not always covered by CoPs, HCBS providers, assisted living facilities, group homes and physician offices in some states are not subject to the mandate. CMS is allowing for religious exemptions.
Earlier this week, the U.S. Fifth Circuit of Appeals imposed a stay order on the OSHA rule in response to suits filed by several states and some private companies.
The White House said it will defend the CMS and OSHA mandates, and it urged employers not to delay their vaccine efforts amid the ongoing legal battles.
Families struggling to provide home health care would get a boost in the Democrats’ spending bill, but advocates say it’s not enough
Boston Globe
Many nights in their East Boston home, 89-year-old Mercedes Gutierrez will ask her granddaughter to take her to bed, despite already being under the covers. But Gloria Porras-Velasquez dutifully lifts her grandmother and carries her to the kitchen, where she gives her a piece of chocolate, then returns her to bed and tucks her in.
Such unusual requests have become routine since Gutierrez was diagnosed with dementia last year. The constant care she requires has been exhausting, said Porras-Velasquez, 38, who has been her grandmother’s primary caretaker for almost two years. She also helps care for her autistic 31-year-old brother, Jonathan Porras, after the pandemic prevented him from returning to his day program.
“Let’s see how much we can do for her,” Porras-Velasquez said of Gutierrez. “She already did so much for us.”
Porras-Velasquez is one of about 48 million people in the country grappling with the challenges of caring for older and disabled family members. There are long waiting lists for subsidized care, a shortage of qualified workers, and expensive out-of-pocket costs.
But advocates say that money — down from the $400 billion President Biden originally proposed — isn’t nearly enough. Larger reforms, such as funneling more money toward wage increases to combat high turnover rates in the home health care field, are essential, they say.
Medicaid is the primary provider of subsidized home and community-based care, and there were nearly 820,000 people nationwide on a waiting list for those services in 2018, according to a study by the Kaiser Family Foundation. Massachusetts did not have a waiting list, but most states did.
Moreover, some immigrants such as Gutierrez don’t qualify for federal aid, while the ranks of home health care workers are stretched thin because of low wages tied to Medicaid’s funding and limited workplace protections, such as paid sick leave and meal breaks.
“Long-term care in this country is a huge crisis, which you don’t understand until you are in it and trying to navigate a system that is fractured and broken,” said Representative Debbie Dingell, a Michigan Democrat who worked with Biden to include the funding in the Democrats’ recent bill. “The first things [the bill will] do is address that problem to help people be able to stay in their own communities, where they are connected and have family and friends.”
Wages and workplace protections under Medicaid vary by state, said Haeyoung Yoon, senior policy director at the National Domestic Workers Alliance. And private and undocumented workers can have lower wages and fewer protections.
“Workers have a whole other set of challenges to come forward to enforce their rights,” Yoon said. “And there’s just not enough resources by government agencies to do this enforcement in a timely, efficient manner, so a lot of workers do experience wage violations.”
Right now, direct care, a broad category that includes people who provide long-term services in the home or at nursing homes, is estimated to add more than 1 million jobs from 2019 to 2029, according to a September report by PHI, an organization that advocates for strengthening the direct care workforce.
Despite this demand, many workers struggle to live on low wages. The median hourly wage for direct care workers was $13.56 in 2020, the report said. Nearly half of the workforce requires some form of public assistance, such as Medicaid, to get by.
Most caregivers tend to be women of color, who have historically been undervalued and overworked, Yoon said. They often face racial and gender discrimination, which only makes it more difficult to advocate for themselves, she added.
That’s why it’s essential that the additional funding is used for increased wages and better working conditions, Yoon said. Without the improvements, the level of care and willingness of people to work in the field will decrease, reducing the availability of quality services for those who need them, the report said.
“This is why it is so important for this program to get funded to do what is needed, which is to extend services and making sure that the workers who do that work have good wages and good working conditions,” Yoon said.
Biden and Democrats have touted the additional spending as a big boost for home health care. The revised spending bill will provide more money to Medicaid to cover direct care services. States have been directed to put the funds toward wage increases, training, and other support services including child care and transportation for workers, according to the latest text of the House bill released last week.
The legislation also calls for the federal government to provide states with grants to recruit and retain workers.
“We’re going to expand services for seniors so families can get help from well-trained, well-paid professionals to help them take care of their parents at home — to cook a meal for them, to get their groceries for them, to help them get around, to help them live in their own home with the dignity they deserve to be afforded,” Biden said in announcing the revised framework on Oct. 28.
But there’s still a group of caregivers who will not benefit from increased Medicaid funding. They’re often family members, such as Porras-Velasquez, who receive little to no support.
Gutierrez doesn’t qualify for Medicaid because she’s only lived in the United States since 2019, short of the five years needed for her immigration status. That means there are few affordable options for her care. Porras-Velasquez took on the responsibilities with no formal training, instead spending hours watching documentaries and researching dementia to better understand her grandmother’s condition. She’s also using GoFundMe to raise money to offset the cost of caring for her grandmother and brother.
There are many others who don’t qualify for Medicaid but can’t afford to pay for care, said Kezia Scales, director of policy research at PHI.
People who fall into this category have limited choices and most end up spending their savings until they can qualify for Medicaid-funded services, Scales said.
“The need for long-term care is a universal need,” Scales said. “We need a way for all of us to contribute to a system and be able to benefit from that system when we need the services. And that, to me, seems like a much more sustainable model going forward.”
Gutierrez receives assistance from La Alianza Hispana, a community-based Boston nonprofit group. But the financial aid only covers six hours of care per week at a day program. Still, Gutierrez’s time there gives Porras-Velasquez a much-needed break.
The rest of Porras-Velasquez’s family helps out. But because she works from home, where she and her husband run two small companies, she has the flexibility to shoulder most of the burden for her grandmother’s care. This means that until her mother gets home from work each evening, Porras-Velasquez’s schedule revolves around Gutierrez’s needs.
“I just work while I’m taking care of them. It’s just trying to set up meetings maybe when they’re sleeping or when I know that they’re going to be down a little bit, just kind of relaxing. And I work a lot at nighttime when my mom gets home,” Porras-Velasquez said. “I don’t have a good balance right now for work. But I’m just trying.”
LEGISLATIVE UPDATES
NC General Assembly; Who Represents Me?
LEGISLATIVE UPDATES FROM JULIA ADAMS-SCHEURICH
NCARF
PO Box 1658
Boone, NC 28607
ncarfinfo@gmail.com
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