Too Sick to Care: Direct-Care Workers in the Coverage Gap

Imagine arranging care for your elderly mother who has the beginnings of dementia. The home care aide, who has established a warm and caring relationship with her, hurts her back while helping your mother out of the shower. Because the home care aide has no health coverage, she doesn’t go to the doctor. She misses a few days of work, leaving you with a substitute sent by the agency. This is confusing to your mother, who doesn’t trust the new aide. Then, as that relationship is improving, the original aide returns but her pain grows worse. Just as you think the situation is stable—your mother is in the hands of an experienced aide whom she trusts—the aide quits because she fears her pain is endangering her clients. You have to start all over again.

This scenario is common. Hardworking direct-care workers give up their jobs because of untreated injuries and chronic illnesses that could have been managed if the worker had access to health coverage. Our new analysis, “Too Sick to Care”, finds that nearly 300,000 of America’s paid caregivers—nursing assistants, home health aides and personal care aides who provide care and assistance to millions of our nation’s elders and people with disabilities—have been denied coverage because they live in one of the 21 states, mostly across the deep South and Midwest, that have rejected federal funds from the Affordable Care Act for Medicaid expansion.

These workers fall into the “coverage gap”—that is, without expansion they are ineligible for Medicaid coverage but earn incomes below the minimum threshold (100 percent of the federal poverty line or $24,250 for a family of four) required to receive tax credits to buy coverage on a state market exchange.

Solving this coverage issue for direct-care workers is significant not only for them but for all of us.

“You have either been a caregiver, you are a caregiver, you will be a caregiver, or someone will care for you.”

With growing numbers of elders and people with disabilities, the demand for direct-care workers—particularly those who care for clients in their homes—is skyrocketing. The two home care occupations—home health aide and personal care aide—will create more new jobs between 2012 and 2022 than any other occupation.

If a large percentage of these workers are unable to access health coverage, we will find it increasingly challenging to find the care we need for ourselves or our loved ones. For people living with disabilities, this isn’t simply an inconvenience, it is a barrier to exercising their civil rights. On the 25th anniversary of the Americans with Disabilities Act, it is important to remember that living independently in the community—a right that people have fought for, for decades—requires access to a robust and stable workforce.

But long-term care employers, particularly those who provide supports in private homes, are already reporting that they cannot find or retain sufficient numbers of workers to meet the demand for services. It’s not surprising: average wages are less than $10 per hour; injury rates are higher than in almost all other occupations; and employer-sponsored health coverage is uncommon. The reality is that one in two workers leave the job each year. This turnover is highly disruptive for clients and undermines the overall quality of care.

So what can we do to ensure that direct care workers don’t go without health coverage themselves?

First, and foremost, we need to continue to advocate for states to expand Medicaid coverage. Direct-care workers are 32 percent less likely than other workers to have employer-sponsored coverage, making Medicaid an important option.  Long-term care employers who depend on Medicaid reimbursement for the majority of their revenues often can’t afford to offer health coverage. For example, in North Carolina, the state pays only $13.88 per hour for personal care services. The average wage for a personal care aide is $9.18, making it extremely difficult for the provider to also provide health coverage.

One solution would be to provide a “differential reimbursement rate” for high-road employers who make affordable health coverage for their workers a priority. Under this scenario, states would pay providers an additional amount per hour of service provided. Recognizing the recruitment challenges in their state, the Maine legislature recently increased Medicaid reimbursement to home care providers from $15 to $25 per hour. The legislation is essentially a “wage pass-through.” Almost the entire increase (85 percent) must be used to increase direct-care worker wages and benefits, including health care coverage, as opposed to being used to fund administrative or other agency expenses.

Finally, about 25 percent of direct-care workers are immigrants. Unfortunately, lawfully residing immigrants who have lived in the US for less than five years cannot access Medicaid coverage for themselves or their children, although 14 states extend some health benefits through state programs. Undocumented immigrants are not eligible for either Medicaid coverage or federal subsidies. Recently, the California State Senate passed a bill to offer coverage to undocumented immigrants in their state. A better solution would be for Congress to create a path to citizenship for direct-care workers, thereby expanding opportunities and improving wages and benefits, and growing and stabilizing the workforce.

As Rosalynn Carter once said, “You have either been a caregiver, you are a caregiver, you will be a caregiver, or someone will care for you.” Acknowledging this universal reality, we must expand coverage to all direct-care workers so that they can continue to provide quality care for those who need it while also caring for themselves and their families.



The Push and Pull Towards an Inclusive Nation

For most Americans, turning twenty-one is an exciting birthday.  But for college student Andrew Furey, it was the date set by the state of Georgia to stop the home health services he needed to stay alive.  Andrew has muscular dystrophy and uses a ventilator and other complex equipment to breathe.  Georgia would provide Andrew these health services in a nursing home but not in his own home.  The Atlanta Legal Aid Society appealed this decision and won, so Andrew was able to receive the services he needed at home.

Over the last 50 years, the battle for inclusion has been a main plot of our American story.  It is a battle we are winning, and  one that we are losing.  It deepens our pride and sometimes our prejudice.  Although often overshadowed, the disability community has been at the center of this struggle for inclusion and our evolving understanding of what inclusion means.

We have seen the push and pull toward inclusion erupt in many forms over the past few weeks.  Most recently, the Supreme Court affirmed both a critical tool in the Fair Housing Act and the right to gay marriage. Yet, we also saw abhorrent acts of violence based on race.  And yet… we saw an Indian American Governor and two Senators (one white and one black) lead South Carolina in taking down its Confederate Flag.  And yet…

In the midst of these skirmishes, people with disabilities celebrate two of the greatest victories for inclusion in our country’s history: Olmstead v. LC (1999) and the Americans with Disabilities Act (1990). These landmark events are related.

Olmstead, an Atlanta Legal Aid Society case, is often called the “Brown v. Board decision” for people with disabilities. The Court explained that its holding “reflects two evident judgments.” First, “institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable of or unworthy of participating in community life.” Second, “confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment.” It ordered the state of Georgia to assist two women with disabilities so they could live in their own homes rather than continuing to confine them to a hospital for people with similar disabilities. Olmstead is slowly transforming our country from a 19th century system of institutions, isolation, and dependence, to a 21st century nation of inclusion, opportunity, and independence.  And yet… amidst the celebration, we recognize that thousands with disabilities still languish on waiting lists, in institutions, and without jobs – waiting for the promise of inclusion to materialize.

On July 26th, we marked the 25th anniversary of the Americans with Disabilities Act (ADA). While today we take it for granted, the passage of the ADA was an arduous struggle.  It is best symbolized by Tom Olin’s photograph of men and women with disabilities leaving their wheelchairs and pushing their way up the steps of the Capitol. In signing the act, President George H.W. Bush declared that the ADA would ensure people with disabilities “the opportunity to blend fully and equally into the rich mosaic of the American mainstream.”

Even though the ADA created legal requirements to enable inclusion and stop discrimination, people with disabilities are often still segregated into institutions and excluded. Civil legal aid providers, including those in the national Protection & Advocacy system, play a critical role in ensuring fair treatment of people with disabilities; but the available resources are insufficient to meet the need.  These organizations advocate for accessible and integrated education, employment, housing, and healthcare for people with disabilities of all ages.  In many states, men and women with disabilities – many of whom live with aging parents – need the help of legal advocates in order to obtain the supports.  Without such help, they may be forced to join others like them who already languish in institutions.

In Georgia, the past five years have shown both the promise of Olmstead and the enormous work that remains.  The United States Department of Justice – in collaboration with the Atlanta Legal Aid Society, the Georgia Advocacy Office, the Bazelon Center for Mental Health Law, and other mental health advocates – reached a settlement to close the state’s psychiatric hospitals and provide an array of supports, including housing, to thousands of Georgians with severe and persistent mental illness.  The state also promised to transition everyone with developmental disabilities from the state hospitals to the community, and to provide limited services to people with developmental disabilities in the community.

Due to the settlement, Georgia has invested more than $170 million in new dollars into these systems with mixed success.  A range of new services are enabling people with mental illness to live meaningful lives in the community.  The state is providing 2,300 new state housing vouchers similar to Section 8 and has adopted a housing first policy that ensures permanent stable housing as a first step before services are initiated.  On the developmental disability side, the state has realized its infrastructure of services is broken and has placed a moratorium on transitions.  The Justice Department and Georgia are negotiating an extension of that part of the settlement.

There is still more to do on Olmstead.  The Atlanta Legal Aid Society will continue to advocate for Georgians in nursing homes who want to be in the community and will push the state to address the 7,900 person waiting list for developmental disability services – a list that includes 2,890 people waiting years for services despite the fact that the state has determined that they need services within six months.

This is just Georgia.  Olmstead cases are being brought to courts across the olmstead2country.  Civil legal aid attorneys now have new tools to bring these cases with pleadings and a legal outline on the new website, developed by the Atlanta Legal Aid Society in partnership with the National Disability Rights Network.  The website also shares the history of Olmstead, provides tools for people to advocate for themselves, and tells the stories of men and women whose lives have been transformed by Olmstead.

In the years since Olmstead and the passage of the ADA, we as a country have engaged in the difficult and revolutionary work of real inclusion.  We have wrestled with what actions governments, businesses, and each of us must take to accommodate our fellow citizens who use wheelchairs and who have sight and hearing impairments.  We have brought students who learn differently into our regular classes.  And we have helped people return to their own homes who thought they would die in nursing facilities.

Along the way, we have learned the value of inclusion.  Ramps assist people with disabilities, and also aging family members, parents with strollers, and, of course, our rolling suitcases.  Assistive technology, smart phones, and computers have made life easier and more efficient for everyone – not just people with disabilities. And our workplaces, classrooms and communities benefit from the participation and contributions of people who formerly would have been unnecessarily locked away in institutions.

In our rapidly diversifying nation, the battle over inclusion will continue in politics, the courtroom, and our local neighborhoods.  The nation should continue to look to our extraordinary disability community for how to do inclusion well.  And yet… our nation must also recognize how far we have to go.



Why We’re Hosting TalkPoverty and Disability Week

“Together, we must remove the physical barriers we have created and the social barriers that we have accepted. For ours will never be a truly prosperous nation until all within it prosper.”

– President George H.W. Bush, at the signing of the Americans with Disabilities Act

 The Americans with Disabilities Act (ADA) turns 25 on Sunday, and it has done a tremendous amount to break down barriers and open doors for people with disabilities. Many of my closest friends and colleagues count themselves members of the “ADA generation” and proclaim with confidence that they would not be where they are today if not for the passage of this watershed legislation. But as we celebrate this important landmark, it would be a grave mistake to declare that the struggle for inclusion is over as a great deal of work remains.

As I’ve written here before, disability is both a cause and consequence of poverty, and twenty-five years after the signing of the ADA, the two still go hand in hand. The poverty rate for working-age people with disabilities remains more than double that for people without disabilities.

People with disabilities are also significantly more likely to experience material hardships—things like food insecurity; not being able to pay rent, mortgage, or utilities; or inability to access needed medical care—than people without disabilities, even at the same income levels. The same is true for families caring for a child with a disability.

People with disabilities are also nearly twice as likely to lack even modest savings to help them weather job loss, an unexpected bill, or other financial shock, according to the National Disability Institute.

Until disability inclusion is a core part of the economic justice movement, we’ll continue to miss a huge piece of the puzzle.

As we look ahead to the next 25 years of breaking down barriers, it’s time to examine our own work as advocates for change. The next wall that needs to come down is the one that keeps disability advocacy in its own bucket, separate and apart from the broader fight for a fair economy and equal opportunity. Until disability inclusion—both social and economic—is a core part of the economic justice movement, we’ll continue to miss a huge piece of the puzzle.

Much of the economic agenda to break the link between disability and poverty is already mainstream. Raising the minimum wage. Boosting the Earned Income Tax Credit for workers without dependent children. Expanding Medicaid. Paid leave and paid sick days. Strengthening Social Security (including updating the woefully outdated Supplemental Security Income asset limits). Add in affordable, accessible housing; accessible transportation; and ensuring access to long-term services and supports and we’ve got a to-do list that would go a long way toward reducing poverty and expanding opportunity for people with disabilities.

As President George H.W. Bush’s signed the ADA into law, he closed his remarks with this: “Let the shameful wall of exclusion finally come tumbling down.”  Let’s take that to heart not only as we fight for inclusionary social and economic policies, but as we shape our work and tactics as change-makers.

It is in that spirit that throughout next week, will feature posts from disability leaders, all exploring the link between disability and poverty and solutions that would increase economic opportunity for people with disabilities. This week is not intended to be a comprehensive examination of the topic. But we hope it will help advance this important conversation, and we look forward to working with our readers, contributors, and partners to break down the silos that have kept disability separate from the broader fight for economic justice for far too long.




Netroots Nation Roundup

It’s time for a very special episode of the nation’s one and only weekly poverty podcast.

This week the TalkPoverty Radio team headed out to Phoenix, Arizona to attend Netroots Nation, a gathering to exchange ideas on how to use media and technology to influence the public debate.

              Travel Trip Phoenix Super Bowl Football

We open this week’s episode with the Weekly Worst, a round up of the week’s worst poverty news, with Alan Pyke, Deputy Economic Policy Editor for Think Progress.  We then join Rebecca on the ground in Phoenix as she talks with Katie Klabusich, writer and reproductive justice activist, who discusses the need to include economic justice in all social justice movements. Rebecca then talks to Congressman Mark Takano (D-CA) about the push to raise the income threshold for overtime pay. We then hear from Analilia Mejia, Executive Director of New Jersey Working Families, about her work advocating for paid sick days for working families amid opposition from Governor Chris Christie (R) and the state legislature. And we close with the voices of the Black Lives Matter protestors who shifted the conversation of the Netroots Presidential Town Hall.

 Here are 7 of our favorite moments from this week’s episode:

  1. “So it wasn’t the maggots. It wasn’t the unrefrigerated meatballs…it was something else!”

Prison Food Tasting

  1. “I can’t imagine how often my folks would have gotten arrested when I was a kid…”

Danielle Meitiv, Rafi Meitiv, Dvora Meitiv

3.“Is there a term for the opposite of mansplaining?”

Cordell Hull, Henry Wallace, John W. McCormack

     4.“If you’re not including economic justice in your movement, you’re doing it wrong.”

Minimum Wage

  1. “This is one of the tools that we have to raise American workers’ wages, and it can be done with the stroke of a pen.”


  1. “The devil has enough advocates.”

Germany Walpurgis Night

  1. “Welcome to Arizona, where the Martin Luther King holiday was repealed.”

Martin O'Malley, Jose Vargas, Tia Oso

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Kids Should be Focused on Homework, Not Working to Find a Home

Brandy became homeless during her sophomore year in high school. She, her mom, and her sister left a home riddled with abuse. Brandy moved more than 15 times – staying in shelters, with friends, friends of friends, and eventually with anyone who would let her sleep on their floor or couch.

Despite these constant shifts, Brandy was able to stay in the same school because of a federal law, the McKinney-Vento Homeless Assistance Act, which among other things paved the way for the hiring of two school “homeless liaisons.” These liaisons helped her travel to and from school, made sure she had something to eat during the day, clothes to wear, and encouraged her to aspire and thrive. This law and the support she received in school proved critical to Brandy’s success in high school and later in college.

As a civil legal aid attorney with Columbia Legal Services, I help homeless students and their families address barriers to their enrollment and participation in school. I use a variety of tools such as community education about McKinney-Vento, data and policy analysis, and individual and legislative advocacy.

McKinney-Vento recognizes and provides strong protections that promote education continuity. It gives homeless students the right to transportation to and from school; the right to enroll in school immediately (even without registration records); and the right to have a district-level homeless liaison that helps out with whatever a student may need for academic success. Those protections make McKinney-Vento one of the strongest education laws and, when enforced, it has done a great deal to assist students like Brandy. But far too few students are afforded these crucial legal rights. Take Brandy’s sister, Felicity. She did not receive the support of a homeless liaison. With each move, she lost credits, friends, and the opportunity to receive a basic education. She repeated the ninth grade four times.

Felicity’s story is unjust and all too common. In Washington State alone, we have 32,000 homeless students, which represents an 82 percent increase from the 2006-2007 school year. That’s enough to fill half of the seats in the Seattle Seahawks’ enormous football stadium. It’s particularly disturbing because children are estimated to lose four to six months in academic progress each time they move during the school year.

Imagine trying to focus in school when you have moved five times during the school year because your family could not find an affordable place to stay

Children and youth who are of colorLGBT, who have limited English proficiency or disabilities are more likely to be homeless than their peers. We also know that homeless students struggle in school when compared to their housed peers; in fact, they are less than half as likely to be proficient in math, with similar gaps in other subjects. These disparities also hurt local communities and society generally, since these students are about half as likely to graduate as their housed peers and more likely to end up in the criminal justice system. It makes sense because imagine trying to focus in school when you have moved five times during the school year because your family could not find an affordable place to stay; or trying to study for an important math test in a crammed one-bedroom apartment where seven other people live.

This crisis of student homelessness comes fourteen years after the passage of McKinney-Vento. While the federal government provides grants to help schools fulfill their obligations under the legislation, these dollars are extremely limited. For example, in Washington, only 34 of 295 school districts received McKinney-Vento grants last year. That means most schools don’t have a homeless liaison, and when they do, they are juggling multiple job positions and can only devote a few hours a week to serving the needs of homeless students. As a result, students suffer and the spirit of the legislation is undermined.

The fact is that we need to increase funding for McKinney-Vento. But we can’t stop there. We must also provide housing subsidies to families experiencing homelessness. A recent study, by the Department of Housing and Urban Development found that families are more likely to maintain stable housing if provided with a permanent housing subsidy.

With this idea in mind, Columbia Legal Services is working to provide stable housing for homeless students and their families by engaging in state-level advocacy. In 2014, we helped pass the Homeless Children Education Act (HCEA) that required the state to provide comprehensive data on homeless student graduation rates. This data-driven approach is already helping advocacy groups and policy makers develop a better picture of how homeless students fare academically compared to their housed peers and which education reforms are needed to better support homeless students.

The McKinney-Vento Act alone cannot guarantee education continuity. The few schools that are able to hire full-time liaisons cannot fully address the biggest need of homeless students: safe and stable housing.  When the bell rings, kids should be concerned about homework, not working to find a home.