Last week, Senate Republicans held hearings for Rep. Tom Price and Betsy DeVos, who respectively have been nominated to lead the U.S. Department of Health and Human Services and the U.S. Department of Education. For those of us who care about access to high-quality health care and education, each nominee has made many concerning statements. However, if we are thinking about the impact of these two departments on America’s kids, the views of the two nominees have the potential to do unique harm, in particular to children with disabilities and their families.

boy with disabilitiesFirst, let’s start with health care. Congressional Republicans are working hard to repeal the Affordable Care Act, although they are encountering resistance nationwide and substantial skepticism from many senators and governors from their own party. Rep. Price, the nominee for HHS Secretary, is fully on board with repealing the law. One of the provisions at risk of being repealed is the essential health benefits (EHB) requirement. The essential health benefits (EHB) package creates a required floor of benefits for all consumers—including children with disabilities—and set a new federal standard to ensure that all consumers have access to needed services to be healthy.

One important benefit for many children with autism, for example, is habilitative services. According to current regulation, habilitiative care is defined as “services and devices that help a person keep, learn, or improve skills and functioning for daily living. Examples include therapy for a child who is not walking or talking at the expected age. These services may include physical and occupational therapy, speech-language pathology and other services for people with disabilities in a variety of inpatient and/or outpatient settings.” Repealing the ACA means denying children with disabilities access to these important services.

It may surprise you how many children have periods of time in their development when they need these services—and then may no longer rely on them. Think about whether a child meets specific milestones around speech, walking, talking or has difficulty with their environment—sometimes termed as “sensory issues” or “being on the spectrum.” These children need access to supports that will give them the tools that they need to succeed at school and in their communities. Access to these types of services at the right time can significantly improve both their health and education outcomes.

For kids, health and education are closely linked. A healthy child is better able to stay focused in school and participate fully in their education. Moreover, research shows that kids with coverage through Medicaid or CHIP, a program that covers over 43 percent children with special health care needs, are more likely to succeed in school and go on to higher education.

So this brings us to Betsy DeVos. Ms. DeVos is a wealthy philanthropist and advocate for school vouchers. She has no training or background in education generally or with public schools specifically—facts that became clear during her hearing to become the U.S. Secretary of Education. Most alarming was her lack of knowledge of a key federal educational reform, the Individuals with Disabilities Education Act (IDEA, 1975).

Because of IDEA, children of all abilities are included in public school classrooms; they are promised in accordance with federal law, a “free appropriate education.” Children are provided needed services and support to attend and thrive in public school settings—through individual education plans, many children also rely on health services inside schools to support their inclusion. This is key for children with disabilities who may rely on a range of services – anything from speech and occupational therapy to having an aide in a classroom to support their learning and daily needs. Ms. DeVos’ lack of understanding of IDEA and lack of support for a federal role in ensuring that the civil rights of children are protected, is an alarming signal to parents across the country who rely on these services and the law so that their children can grow up included in their communities and have healthier, more productive lives.

As we face a future that could hold the repeal of the ACA and the emergence of a Department of Education that does not stand up for the civil rights of children with disabilities, I am acutely aware of the lose-lose situation for kids and their families. As a parent with a child who relies on both school and health services to support healthy growth and development, I am baffled and dismayed at the thought of an America that could take a giant step backward in the areas of health and education, harming some of the most vulnerable among us.

Medicaid provides health insurance coverage to millions of children, older adults and people with chronic health conditions. This has meant many more kids, grandparents and people with chronic health conditions have been able to get the care they need--from well-child exams to medications to services that allow people to age with dignity in their homes and communities.

In addition to providing access to vital health care services, Medicaid has become a more flexible and dynamic program that allows states additional ways to provide more efficient and effective care that’s attuned to the needs of their population. States have been doing innovative things with their Medicaid programs for years through waivers, and the passage of the Affordable Care Act only bolstered states’ abilities to improve care delivery through their Medicaid programs. Through new funding opportunities and mechanisms for innovation, states have been testing out methods that reward value instead of volume and address the social determinants of health. For example, through its Medicaid program, Louisiana provides supportive housing services to individuals with disabilities, and Maryland helps beneficiaries find and maintain employment in their community.

Medicaid coverage and funding is the foundation for these health system transformation initiatives, but the president-elect and Congressional Republicans have proposed dismantling the Medicaid program as we know it by imposing block grants or per capita caps. Either of these options means bad news for our work to address the social determinants of health and to create even more innovative and effective Medicaid programs. The bottom line is that block grants and per capita caps would result in drastic cuts in funding and will leave states scrambling to meet even the most immediate needs of beneficiaries, without opportunities to improve the health care system to keep people healthier (and keep costs down) in the longer-term.

For example, House Speaker Paul Ryan’s proposal released this past summer would cut federal Medicaid funding per beneficiary by as much as 50 percent over 10 years through per capita caps, while block grants could slash total federal Medicaid funding by nearly a third. Rather than increasing innovation, funding cuts due to block grants and per capita caps would hinder innovation and may even prevent it altogether. These policy proposals would result in numerous negative impacts including:

  • Enormous funding cuts that would force states to cut costs dramatically in the short term. This means that states would be focused on ways to cut eligibility, benefits, and provider payments rather than ways to improve care for enrollees and lower long-term costs through innovations and investments in population health.
  • A decrease in available funds meaning that states wouldn’t be able to provide the upfront investments and incentives needed to help providers transform their practices to provide more integrated services and better care coordination.
  • Eligibility cuts that will mean any Medicaid innovations states are able to accomplish would reach even fewer people.

Finally, Medicaid cuts won’t occur in a vacuum and would likely be accompanied by other cuts to social services and supports. Limited funds on all fronts will create competition for resources and make it even harder for states to encourage collaboration with social service providers and address social needs through Medicaid.

Congress is already on its way to rolling back the important advances in the Affordable Care Act, and Congressional Republicans have their sights set on dismantling Medicaid next. In the coming days, we must ensure decision-makers understand that massive funding cuts to Medicaid will constrain – not promote – innovation. We must continue to work together to lift up the message that Medicaid is already an innovative and effective program.

The classic “bait and switch” in the world of retail sales is to entice people with an offer of something good and then switch them to something of either inferior quality, higher price or both. This is a perfect description of the health policy changes the incoming Trump administration and Republican congressional leadership are trying to foist on the American people. The setup for this strategy is to point to a real problem – in this case, deductibles and out-of-pocket costs, which are indeed too high for many households. High out-of-pocket costs impose a hardship on moderate income families, especially for people with chronic conditions,  and also undermine the perceived value proposition of purchasing health insurance. Healthy people are less likely to buy insurance if deductibles are too high to make their anticipated health care needs more affordable overall.

To deal with that problem, Republicans are promising something better than the ACA – "something "terrific" (i.e., the "bait"), but they have remained opaque with respect to what that “something” might be or when it will appear. The reason may be that the plans they have floated so far would make out-of-pocket costs higher, not lower (i.e., “the switch”). But many Republicans, especially in the Senate, are starting to worry that people are not falling for the scam. This is leading to further obfuscation about the timing and content of a replacement plan and has even led some commentators to assert that the original "repeal and delay" strategy is dead.

Unfortunately, reports of the demise of repeal and delay – or "repeal and run" as Sen. Elizabeth Warren termed it at a health care rally in Boston over the weekend – are premature. The Senate and House have both set repeal in motion with their votes last week, but replace is nowhere on the horizon.

Is Replace Even Possible?

It's not at all clear that Republicans will ever be able to coalesce around a plan among themselves, let alone one that can attract enough Democrats to put it over the top in the Senate with the required 60 votes. New York Times columnist Paul Krugman offers a metaphorical policy explanation for why replace remains so elusive. He suggests that the “three legs” of the ACA “stool” – elimination of pre-existing conditions, the individual mandate and tax credits – are indivisible. If you take away any of the three, the stool will collapse. While there is something to this framing, all three of these “legs” could, in theory, be tinkered with rather than lopped off, and the stool relabeled "Trumpcare." (For example, the individual mandate could be converted to a late-enrollment penalty like the one used in Medicare.)

The heart of the Republicans’ problem is even more fundamental and is laid out clearly by Jonathan Chait in New York Magazine. It's worth quoting directly: "Giving people the better coverage they promised, or even minimally acceptable coverage, requires providing resources and there's no way that's ideologically acceptable to conjure those resources, which is why the unified Republican plan has been stuck in the almost-there stage since 2009."

In other words, Republicans can't have both their tax cuts for the rich and their "terrific" health plan, too. This fact was acknowledged by Sen. Bob Corker last week, but does not seem to have broken through to President elect Trump, who made a surprise "announcement" over the weekend that his health plan covering everybody and with much lower deductibles than the ACA, was almost ready (an announcement that couldn't possibly have had anything to do with wanting to divert some attention in the news cycle on a day when tens of thousands of people in communities across the country were rallying to protect health care coverage.) Of course, there were no details provided.

It will be interesting to see what Trump's new plan is (cross-state sale of health insurance?), if it ever actually materializes. But unless there is adequate funding, the mirage of an acceptable replacement plan will promptly dissolve. And juxtaposed against mammoth tax cuts for the wealthiest households, like the ones in the 2015 repeal bill passed by Congress and vetoed by President Obama, skimpy subsidies and even skimpier coverage will look miserly indeed. It's hard to say at this point whether there are a few Republican senators with both the good sense and the political will to resist the looming disaster of ACA repeal – a disaster that will fall heavily on the many rural communities that voted for Donald Trump. But if not, there is every reason to expect that "Trumpcare" will become the new "Hooverville" – a lasting symbol of government indifference and malfeasance, as well as an enormous political liability for the GOP.

Honoring Dr. King

Martin Luther King Jr. said, "Of all the forms of inequality, injustice in health care is the most shocking and inhumane." It's therefore more than a shame that instead of press coverage of a major new report on how communities can attack health disparities, released by the National Academies of Medicine Science and Engineering, the major news outlets were focused on attacks on a hero of the civil rights movement by the president-elect. Tackling the persistent health disparities that plague our country would be a truly fitting tribute to Dr. King. Instead we are faced with the threat of policies that would make disparities far worse, including not only the rollback of the ACA, but threats to the core Medicaid program that covers millions of low-income children, seniors and people with disabilities. We can honor Dr. King and the thousands of activists of the civil rights movement by drawing inspiration from their activism and resistance as we confront an existential threat to the health and economic security of millions of people in our country.

This blog is part of a series to highlight the dangers of the repealing the Affordable Care Act. Multiple times a week, Community Catalyst will highlight a different constituency to draw attention to the benefits the ACA has afforded them and to outline what a loss of coverage would mean.

Lesbian, Gay, Bisexual and Transgender (LGBT) older adults face many of the same health and aging challenges other older adults face, but more pronounced. As a result, they are arguably more at risk if the incoming administration and Congress repeals the Affordable Care Act (ACA) without a replacement plan and/or makes significant and harmful changes to Medicaid and Medicare.

LGBT older adults face unique risks within the health care system due to the standard issues facing an aging population combined with their sexual orientation or gender identity, such as:

  • Aging Combined with Discrimination: Similar to the older population in general, LGBT older adults face challenges with aging: declining health, diminished income, and the loss of friends and family. LGBT older adults, however, also face the added burden of actual or feared discrimination on the basis of their sexual orientation and/or gender identity. Many choose to go back into the closet for fear that caregivers will discriminate against them. Transgender adults, however, do not even have that option. Despite federal prohibitions on discrimination based on sex stereotyping and gender identity and the prohibition of discriminatory practices toward LGBT individuals based on health status - such as being HIV positive - built into the ACA, the sex stereotyping and gender identity protections are currently under attack in the courts, and LGBT older adults remain one of the most invisible, underserved and at-risk elder populations.
  • Isolation from Society, Services and Supports: Studies show that LGBT older adults are twice as likely to live alone; half as likely to have close relatives to call for help; and more than four times less likely to have children to help them. Nearly one-in-four LGBT older adults has no one to call in case of an emergency. At the same time, studies document that LGBT older adults access essential services – including visiting nurses, food stamps, senior centers and meal programs – much less frequently than the general aging population.
  • Lack of Access to Culturally Competent Health Care: The U.S. Department of Health and Human Services has found that LGBT older adults face additional health barriers because of isolation combined with a lack of access to social services and culturally competent providers. These barriers result in increased rates of depression; higher rates of alcohol and tobacco use; and lower rates of preventive screenings. 
  • Higher Rates of Poverty: LGBT older adults reflect the diversity of our nation in terms of gender, race and ethnic identity. But there is one critical statistic where they do not reflect the norm: they have much higher poverty rates and lower average household income than their straight and cis-gender counterparts. In fact, 35 percent of SAGE clients in New York City have annual pre-tax incomes below $10,000 and rely on Medicaid – a program with looming threats of block grants or per capita caps - to provide their medical care. An additional 35 percent subsist on annual pre-tax incomes of $20,000 or less and qualify for coverage under Medicaid expansion or could utilize tax credits to purchase insurance on the Marketplace. The Medicare-eligible segment of this population benefits from the ACA having lowered Medicare Part B premiums, the closing of the “donut hole” for prescription drugs, and payment and delivery reforms aimed at improving quality and the coordination of care for individuals with complex care needs.
  • HIV: As of 2015, the CDC estimates that one in two people who are HIV positive in the United States are now over 50. Yet little attention and money is targeted towards prevention for this population. One of the free preventive services covered by the ACA is HIV screening, though recommended testing in the U.S. cuts off at age 64. As a result, older adults are much more likely to be dually diagnosed with HIV and AIDS if and when they are ultimately tested.

Because of higher rates of health disparities, un-insurance, poverty and a greater reliance on programs like Medicaid and Medicare - two programs that could be facing significant retooling and subsequent funding cuts in the coming years - the protections provided by these programs and enacted in the ACA are critical for improving the quality of life for older LGBT individuals.

As we enter an uncertain time, we believe that we must do more to honor and support the LGBT elders who fought the fight and paved the way for the recent advances we have seen on LGBT rights. The least we can do is ensure that this population still has access to the foundational supports provided by the ACA, Medicaid and Medicare.

Aaron Tax, Director of Federal Government Relations, Services and Advocacy for GLBT Elders (SAGE)

With their agenda so at odds with the preferences of even their own voters, it is no wonder congressional Republicans are focusing their attention on the alleged shortcomings of the Affordable Care Act (ACA) rather than on what they actually propose to do. In order to escape responsibility for the damage they will do to the health system by repealing the ACA, they will try to paint a misleading picture of the law. First, they will entirely omit any discussion of the law’s accomplishments; second, they will advance a series of misleading arguments. That strategy was on full display with House Energy and Commerce Chair Greg Walden’s recent release of an "Obamacare Reality Check.” While repeating opposition arguments isn't generally good messaging practice, there are a few other significant problems with the "reality check":

  • Yes, enrollment is lower than originally projected, but that’s partly because fewer employers have dropped coverage than Congressional Budget Office expected. A lot of people would say that is a good thing. And while cost-per-beneficiary is higher than projected, total cost is much lower.
  • Many analysts believe that the premium increases of the past year represent a one-time correction (or would, were it not for the dramatic uncertainty the repeal effort is creating in insurance markets).
  • Also conveniently ignored is the fact that congressional Republicans have actively, and in part successfully, worked to cause premiums to rise by restricting reinsurance payments.

Access to plans has declined in the past year, but repeal will make the problem much worse by causing the non-group insurance market to essentially unravel. Also unmentioned, before the ACA, millions were locked out of coverage entirely because of pre-existing conditions. The lack of plan choice mainly shows up in rural areas that didn't have a lot of plan choices before the ACA was passed.
Finally, the total cynicism of the Republican attack on the ACA is revealed in their discussion of high cost sharing. Not only do they blame increases in employer plan deductibles on the ACA
(something the law had nothing to do with), but all of their proposed replacement plans rely heavily on high-deductible plans and generally promote skimpy coverage that would make the problem much worse. As former president Bill Clinton said, it takes some brass to attack someone for doing what you yourself are doing.

Looking Before They Leap?

Although so far there is no indication that Republican leaders are rethinking their approach to the ACA, not everyone in the party seems so eager to drive the health care system off a cliff with nothing more than a hope that something will turn up to prevent the fiery crash before it is too late. An increasing number of Republican senators are voicing concerns about the ‘repeal now replace later’ strategy. And some are waking up to the fact that repealing in haste now could make replacing later much more difficult. Of course, voicing concerns is not the same as actually voting against repeal with no replace. Nor should anyone imagine that any of these senators has learned to stop worrying and love the ACA. But just the fact that they are starting to think seriously about the implications of what their leadership is rushing them to do is an important step in the right direction.