Posts About Health System Transformation

On top of the uncertainty surrounding Medicaid expansion and Medicaid funding stemming from GOP Affordable Care Act (ACA) repeal efforts, HHS Secretary Tom Price and CMS Chief Seema Verma’s recent letter to governors adds another layer of change and uneasiness. This letter affirms the new administration’s intent to use Section 1115 Medicaid waivers to cut key consumer protections that have made Medicaid a vital, comprehensive source of health and financial security to millions of low-income Americans.

Concerning Waiver Directions

Strong evidence demonstrates that Medicaid is efficient and cost-effective – and that the ACA’s coverage expansion has had a positive effect on state budgets and enrollees’ health. Nevertheless, the Price-Verma letter gives states the green light to move towards Medicaid policy provisions that could lead to loss of coverage and access to care, and potentially hurt state budgets, such as:

  • Cost-sharing requirements. Studies show Medicaid beneficiaries lose coverage and experience barriers to care when states impose premiums and copayments. An evaluation of Indiana’s most recent waiver suggests beneficiaries who are subject to copayments likely have higher use of the emergency department (ED) as a result. Collecting premiums and copayments has shown to be inefficient and costly.
  • Eliminating non-emergency medical transportation (NEMT). Medicaid beneficiaries are more likely than those privately insured to have health care access barriers and NEMT helps bridge that gap. NEMT helps Medicaid expansion enrollees access critical care and treatment including behavioral health services, preventive health services and substance use treatment.
  • Copayments for non-emergent use of the ED. Copayments do not reduce unnecessary use of the ED, financially burden Medicaid consumers and fail to address larger systemic health care access issues.
  • Waiving presumptive eligibility and retroactive coverage. These provisions facilitate access to care and important protections for both enrollees and the providers that serve them, especially when there are delays in the application and enrollment process.
  • Support for work requirements. The letter stops short of explicitly saying it will approve work requirements, but includes language that strongly encourages states to impose training or work programs. Work requirements would be onerous on beneficiaries (most of whom are already in working families) and costly for states to administer.

We are troubled by a few other aspects of the letter. First, HHS’ intention to expedite waiver approvals and extensions may roll back important public input and evaluation requirements that have supported a fair and transparent waiver approval process. Second, a willingness to approve state waiver requests that replicate approvals in other states is troubling, since 1115 waivers are meant to be temporary demonstrations to test different approaches to providing Medicaid services. HHS should assess the impact of a waiver provision on access to care for beneficiaries in a single state, before approving it across the board.

Finally, the letter expresses an incorrect view that childless adults are not “vulnerable” and do not fit in with the mission of the Medicaid program. In fact, these low-income adults have experienced a historic lack of access to affordable health care, fluctuating income and language and cultural barriers, and thus, are appropriately served by Medicaid. Covering more adults under Medicaid has benefitted state budgets, consumer health and hospitals. Rolling back these gains would be detrimental.

Trump HHS Commits to Combatting Opioid Epidemic, But There’s a Catch

Medicaid is a critical source of coverage for adults with substance use disorders (SUD). For instance, almost 500,000 individuals (most who were previously uninsured) in Ohio have received  treatment for mental illness or substance misuse under the state’s expansion of Medicaid. HHS’ letter commits to continuing the important work begun in the Obama administration to enhance Medicaid services for SUD and improve access to comprehensive substance abuse treatment. For instance, HHS plans to continue the Medicaid Innovation Accelerator Program that provides technical assistance to states in enhancing SUD services. We hope that HHS continues the previous administration’s explicit support of waivers that contained a specific set of evidence-based measures including Screening, Brief Intervention and Referral to Treatment (SBIRT), integration with primary care, recovery support services, and medication-assisted treatment. Of course, the proof of HHS’ commitment will be in what state proposals they eventually support.

However, HHS Secretary Price’s support of ACA repeal and cutting federal Medicaid payments is at odds with the letter’s promise to address opioid addiction. The latest ACA repeal bill would jeopardize an estimated 1.3 million Americans with substance use disorders or mental illness who have received treatment through Medicaid expansion.

Allowing States to Assess Their Own Compliance on Home and Community-Based Services

The letter also says the administration will give states more time and say in implementing regulations ensuring that long-term services and supports are appropriately provided to people in their homes or communities. Allowing individual states to assess their own compliance could open the door to services that are less responsive to consumer needs and preferences.

Keeping an Eye on Medicaid

The upside to this letter is that none of the harmful waiver provisions listed can take place unless the states themselves choose to pursue such avenues. However, we do anticipate that this is just the first of many regulations and guidances HHS will produce that could undermine consumer protections in Medicaid. We intend to track these developments and provide more resources that equip advocates to push back. Stay tuned!

Reviews are in on the House GOP health care plan, which has been enthusiastically embraced by President Trump, and they are pretty terrible. The plan has been panned by nurses, doctors, hospitals and insurers as well as organizations representing older adults, cancer patients and others. But don't take their word for it, most of the conservative health policy establishment also gives the bill a failing grade. Setting aside the far right ideologues (who also hate the bill, but for different reasons) ACA critics have, among other things, called the plan "worse than Obamacare itself" and say there is "little doubt it will price millions out of the health care market".

Our dystopian health care future under ACHA

Thanks to the ACA, the percentage of uninsured people in the U.S. has dropped to an all-time low. But that progress would be reversed under the GOP’s proposed plan. The Brookings Institute estimates that 15 million people would lose coverage. The combination of reduced tax credits, increased out-of-pocket costs and weak incentives to enroll would touch off an adverse selection spiral that would push premiums higher and cause even more people to drop coverage.

These changes are only the tip of the iceberg. Cuts to the Medicaid program would also force millions more to lose coverage. Cuts to Planned Parenthood would result in an increase in unplanned pregnancies and a significant decrease in health care access for millions of women and LGBTQ people. As the dominoes continue to fall, providers would begin to see revenue go down as uncompensated care costs rise, leading to service cutbacks, layoffs and in some cases, especially in rural communities, hospitals would be at a heightened risk of closure. Resources to combat the opioid crisis would be lost and states' capacity to finance long term care for older adults and people with disabilities would be undermined just as the need increases due to the aging of the baby-boom generation.

It would only get worse as it moves through the House (if it does). The bulk of the discussion in the House has been with the far-right Republican Study Committee and even farther right Freedom Caucus who are demanding more cuts to the Medicaid program. With only 22 votes to spare, it is likely that Speaker Ryan will accommodate their demands and Pres. Trump has already signaled that he is on board.

Why is the bill so bad?

Why have the Republicans produced such a bill so bad that even their own policy experts think it is a disaster? The answer is that the repeal and replace debate has always been a political exercise driven more than anything else by the needs of far-right House members in deep red districts. Their biggest fear is that what happened to Eric Cantor (a successful primary challenge from the right in case you forgot) will happen to them. Their goal is to vote on a bill that hews as closely as possible to the Heritage Action orthodoxy. Whether that bill actually offers a framework for workable health policy or even whether it ever becomes law are secondary concerns.

And while House districts are becoming less ideologically diverse, the bill that is emerging is very bad for a number of states with key Republican Senators.

Consider West Virginia; the state has seen one of the biggest drops in the percentage of uninsured in the country thanks to both Medicaid expansion and ACA tax credits. Additionally, there has been a huge expansion in access to treatment for substance use disorders. As a relatively rural state, both West Virginia’s hospitals and rural consumers would be big losers as coverage declines.

Or consider Alaska; no state in the country would feel a bigger impact from the rollback of health insurance tax credits. On average people in Alaska would receive $10,000 less than they do now.

Or take Arizona, a state with a lot of early retirees and a rapidly growing elderly population. Proposals to increase insurance costs for older adults and cut funding for Medicare could prove very unpopular. And a squeeze on Medicaid funding would undermine the state's successful Medicaid expansion as well as its ability to finance long term services and supports for its aging population.

Maine is in a similar situation even though it did not take up the Medicaid expansion. With the oldest median age population in the country as well as being a relatively low-income state, increases in insurance costs for older adults and decreased Medicaid funding would hit the state hard.

It's no wonder that senators from these states have expressed reservations about the emerging legislation. And it is still unclear that, given differing political dynamics between the House and the Senate, there is enough common ground between the two branches to get a bill through.

Sen. McConnell is a skillful and determined party leader, but success of a bill with consequences as disastrous as this one be might actually be worse for Republicans than failure. Pres. Trump has already put Plan B on the table -- let it (cause it) to fail and blame the Democrats. While they would never admit it openly, some Republican Party leaders may secretly prefer continuing to have a weakened ACA to kick around for a couple more years. If they succeed in passing a law, then they would own the consequences of Trumpcare and it ain't going to be pretty.

All this suggests that the debate over the direction of health policy is far from over regardless of the outcome of ACA repeal efforts over the next few weeks. If a bill passes, Republicans will feel a need to put lipstick on the pig (an effort that will probably be much better financed than defense of the ACA ever was). However, as coverage declines and the effects ripple through providers, state budgets and communities across the country, it will be hard for them to escape the blame. If the legislation fails, expect ongoing efforts to undermine the ACA through administrative action (and inaction) along with efforts to pin the blame for the resulting problems on the law itself. Either way expect the fight to carry right into the 2018 election.

This blog is part of a series to highlight the dangers of 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.

Olivia's Story

In 2014, Community Catalyst shared Olivia Richard’s story in a video. Olivia is enrolled in the One Care program, the Massachusetts demonstration project which coordinates care for people with disabilities eligible for both Medicare and Medicaid (“dual eligibles”). Olivia uses a wheelchair and relies on personal care attendants (PCAs) to help her with activities of daily living. Before enrolling in the One Care program, she had not been receiving an adequate amount of PCA hours, nor other services she needed to achieve the quality of life and degree of independence she envisioned for herself. After enrolling in One Care, Olivia was able to live independently, with services that met her needs, preferences and goals, thanks to a coordinated plan developed together with her Independent Living-Long Term Services and Supports Coordinator. This was possible because of the Affordable Care Act (ACA), which enabled the creation of the dual eligible demonstration projects now ongoing in Massachusetts and 12 other states (formally termed the Financial Alignment Initiative.)

Fast forward to November 9, 2016: Individuals like Olivia now face the serious possibility that this much-improved coordination of their Medicare and Medicaid benefits may be significantly undermined by repeal of the ACA, impacting the delivery of critical services. Dual eligibles are a particularly vulnerable population – doubly in the line of fire – not only from the immediate attack on the ACA, but also from proposals circulating among the Republican-controlled Congress that threaten to seriously undermine each program in other ways in the future.

Beyond the unfolding rush to repeal the ACA, proposals in favor among Republican congressional leaders and the nominee for HHS Secretary, Rep. Tom Price, would permanently rework the structure and financing of Medicaid and could end the existing guarantee of coverage for all those who qualify for the program. In addition, House Speaker Paul Ryan has for years floated proposals to change Medicare from a defined benefit program to one in which adults over 65 get “premium support” to purchase private insurance, a plan slanted toward benefitting those older adults who are more affluent and in better health, leaving low-income elders in poorer health without the safety net that they have counted upon.

Who Are the Duals?

Dual eligible beneficiaries are entitled to Medicare either by virtue of age (being 65 or older) or by having a permanent disability and receiving Social Security Disability Insurance (SSDI). They are also eligible for Medicaid based on low-income eligibility guidelines. Currently, there are over 10 million dually eligible beneficiaries, with the majority (59 percent) aged 65 and older, and with most of them (73 percent) also eligible for full Medicaid benefits. Dually eligible beneficiaries comprise 14 percent of all Medicaid beneficiaries, but account for 33 percent of Medicaid spending; they also make up 20 percent of the Medicare population, but account for 35 percent of Medicare spending. In part, this disproportionate spending is because dual eligibles tend to have complex health needs, with higher rates of diabetes, mental illness and cognitive impairment. Another reason is that these beneficiaries have to navigate two complex systems, Medicare and Medicaid, which more often than not, has resulted in very fragmented and inefficient care. 

Altering Medicaid Will Have Serious Implications

The most significant implication of GOP proposals to restructure Medicaid – like changing to block grant or per capita cap funding methods – is the strong likelihood that eligibility will be limited and critical services will be cut, as the total federal dollar payments to states would be greatly reduced. Block grants or per capita caps would also limit states’ abilities to pursue innovative strategies that address issues beyond medical services such as access to long-term services and supports and the addressing of social determinants of health, which result in better integrated and more coordinated care. This is true for many low-income populations, but the dually eligible population is particularly at risk.

Medicaid, especially since the passage of the ACA, has served as fertile ground for innovative solutions to addressing health care cost, quality and access issues. Medicaid programs have been vital to improving care for dual eligibles, often serving as a catalyst for innovation. Fundamental changes to the Medicaid program could jeopardize such innovative programs as:

  • The Dual Eligible Demonstration Projects: as noted above, thirteen states are running demonstration programs – like the One Care program in Massachusetts helping Olivia – to better align the financing of the Medicare and Medicaid programs in order to better integrate services for dual eligible enrollees. These demonstration projects could not have been possible without the ACA creating the Center for Medicare and Medicaid Innovation (CMM) and the Medicare-Medicaid Coordination Office (MMCO) within CMS.
  • Medicaid Accountable Care Organizations (ACOs): ten states are actively running Medicaid ACO programs to improve care coordination and delivery of Medicaid benefits by holding providers accountable through quality improvements, increased financial risk and innovative information technology. Some states are using or are planning to use ACOs as a model of care for dual eligibles, such as Maryland and Oregon.
  • Initiative to Reduce Avoidable Hospitalizations among Nursing Facility Residents - the MMCO and CMMI are spearheading an initiative to help improve the quality of care for people in long-term care (LTC) facilities by reducing potentially avoidable inpatient hospitalizations. The most recent evaluation report for this initiative shows a decline in all-cause hospitalizations and potentially avoidable hospitalizations in participating sites. The evaluation report also finds that there were reductions in overall Medicare expenditures relative to a comparison group.

Innovations such as these will be seriously impacted if the ACA is repealed and/or if Medicaid funding were to be radically undermined. Investments in delivery and payment reform in Medicaid are critical and must continue. The dual eligible population has complex medical and social needs and taking away needed services and shifting costs onto a group of consumers the least able to take on new financial stresses is bad policy. If innovative changes to our health care system can work better for the most vulnerable, they can work better for everyone. Stakeholders, including providers, plans, payors and advocates, need to come together now and raise their voices loudly to protect the ACA and the Medicaid program itself. This fight is nothing less than a fight for health care justice, period.

HIH Collage

This final 2016 edition of Health Innovation Highlights comes to you on the Winter Solstice. For those of us in the Northern Hemisphere, today we experience the inflection point from the days getting shorter, to the gift of a few more minutes of daylight each passing day through winter and spring. In other words, we enter a phase of “gathering light,” even as we prepare for our coldest months.

In these coldest months, we face threats to health coverage, access, innovation and quality. Along with our colleagues here at Community Catalyst and in coalition with health care and social and economic justice groups nationwide, we are fighting efforts to take away health care, particularly from those who are most vulnerable, like older adults, individuals with disabilities, and those with complex health and social needs.

As we prepare for the year ahead, I’d like to spend a few moments during this holiday season to reflect on the many things for which we are grateful. We’ve been blessed to have had the chance to celebrate many successes – not just of the Center, but our partners as well – in our mission to elevate the consumer voice as the key to health system innovation.

A few highlights from our first trip around the sun:

Launching the Center: At our January launch, Dr. Donald Berwick called on all of us to think about health beyond the traditional enclaves of the health care system and in the context of communities. He observed, “The new news is that to achieve health and justice, we have to reconsider and redesign the very fabric of what we call health care today.” His words, and the insights shared by panelists John Arnold, Amy Berman, Stuart Butler, Robert Crittenden and L. Toni Lewis, gave us our marching orders to create a health care system that better meets the needs of all.

Supporting Maryland’s Faith Community Health Network: In February, the Maryland Citizens’ Health Initiative, a longtime Community Catalyst partner, in collaboration with LifeBridge Health and faith leaders from throughout the state, launched the Maryland Faith Community Health Network with a training retreat for participating clergy and lay leaders. The concept is simple and effective – connect liaisons from participating congregations with congregants who are in the hospital to help them get the most out of their inpatient care and get the services and assistance they need once they are discharged.

Helping consumers prepare for Managed Long-Term Services and Supports in southwestern Pennsylvania: In June, we were welcomed to Pittsburgh by the Jewish Healthcare Foundation to lead a training for community and consumer groups. We were honored to play a role in helping these groups prepare for and engage in the launch of the Community HealthChoices program. We believe that the active engagement of consumers and community members will be critical to ensure that this program ultimately provides better, more coordinated care to Medicaid beneficiaries who need long-term services and supports.

Documenting best practices in consumer engagement in Medicaid ACOs: Medicaid accountable care organizations (ACOs) are an increasingly popular option for improving the quality of care and health outcomes while containing health care costs. But if Medicaid ACOs are to be successful, members and communities served by these programs must have a voice in their design, implementation and ongoing oversight. We dug into program documents and debriefed consumer advocates engaged in the design and rollout of these new programs to learn about what is working and what isn’t, and to identify ways that health care organizations can encourage meaningful consumer engagement.

Fighting to improve transportation services for low-income individuals: We have been hearing consumer horror stories from partners across the country about non-emergency medical transportation (NEMT). NEMT is a critical service that helps Medicaid beneficiaries without access to transportation get to doctors’ appointments, dialysis and cancer treatment. We have heard about children with compromised immune systems sharing transportation with sick individuals, patients with kidney failure who can’t get to their dialysis treatments and elderly people who are abandoned for hours at the doctor’s office. To address this issue, we are coordinating consumer organizations that are working to improve NEMT in their states. We also worked with our friends at Justice in Aging on a brief that highlights recommendations that policymakers and advocates can adopt to improve NEMT across the country.

Protecting care for people with disabilities in Massachusetts: In Massachusetts, advocates for people with disabilities scored a significant win when MassHealth, the state’s Medicaid program, backed off its proposed limits on personal care attendant hours. Disability advocates organized to raise awareness about how harmful the proposed limits could have been for the elderly and people with disabilities, who depend on personal care attendants to help them live with independence and dignity. While the fight is not over – the state loosened its restrictions but didn’t eliminate them entirely – the work of the advocates, on a very short timeline and in the midst of many other battles, was impressive indeed.

Bridging the gaps between health and housing: Every day, doctors and nurses care for people with serious illness who live in shelters, on the streets or in unsafe housing. And we know that unless we address these patients’ need for safe and secure housing, they will be back to the emergency room and hospital again and again with ever-worsening (and more expensive) conditions. In Pennsylvania, our partner Pennsylvania Health Access Network launched a collaborative Housing as Health campaign that brings together a statewide coalition of physical and behavioral health care providers, social services, housing-related entities, faith and community groups, advocates, and people enrolled in Medicaid to build a case for supportive housing services. Our state partners have been successful in elevating the issue of housing as a social determinant of health that should be prioritized by educating communities and policymakers, sharing the impact and savings of supportive housing services and sharing personal stories that illustrate the importance of their campaign.

Building the consumer voice in Rhode Island’s dual eligible demonstration project: In Rhode Island, advocates played a major role in the creation of a new Implementation Council to guide the state’s dual eligible demonstration project. Our state partners, Rhode Island Organizing Project (RIOP) and Senior Agenda Coalition, were instrumental  in everything from the drafting of the bylaws, to training of consumers as they take their places on the council. We hope that these strong consumer voices will help steer this demonstration toward truly person-centered care.

The “lights” that I’ve gathered here – and so many more that space doesn’t allow for – illustrate the dedication, passion and commitment of the consumers, consumer health advocates, providers, health care leaders, and others we at the Center have had the honor to encounter, learn from and collaborate with in our first year. Even as we confront the challenges ahead, I know that we will continue to gather light, on our journey to consumer-centered care.  In this holiday season, I wish you peace and light in the year to come.

The holidays are often a tough time for people struggling with drug and alcohol addiction or mental illness. But Congress has provided an early present that may ease some of these struggles in years to come:

  • Half a billion dollars in state grants to be awarded early in the new year to prevent and treat addiction to opioids, including heroin and pain pills, and a promise for another half a billion dollars in 2018
  • Authorization of a 5 year, $50 million demonstration project to train more health professionals to provide mental health and substance use disorders services in underserved community-based settings that integrate these services with primary care
  • Authorization of $25 million in grants to increase screening and treatment for post-partum depression, and separate support for early intervention and treatment of mental illness in children
  • Small steps to improve oversight and enforcement of the parity law preventing health insurers from discriminating against people with mental illness or substance use disorders
  • Allowing use of federal grants for programs that provide community-based services to divert people with substance use or mental illness from the criminal justice system prior to arrest or before they are “booked” for an alleged offense

These gifts come in a giant package called the 21 Century Cures Act that President Obama signed into law yesterday, and a separate law he signed on Saturday to fund the government through April. The Cures Act, approved in a rare bipartisan congressional vote, also includes many other provisions on cancer, research and other health issues. Unfortunately, the Cures package also includes a fair amount of coal:

  • It robs the Prevention and Public Health Fund of $3.5 billion that was authorized in the Affordable Care Act for prevention services across the health spectrum.
  • It weakens Food and Drug Administration rules designed to protect Americans from unsafe medicines.
  • While it authorizes more funding to the National Institutes of Health, the money is vulnerable to cuts because it has to be voted on annually.

Like many gifts being received this season, this present needs some assembly.

The federal government just released the application for the $500 million in opioid state grants, which can be used for prevention, treatment, and recovery support services. All states are eligible to apply. Advocates and their partners need to weigh in with state officials to make sure they apply and that this money is put to the best use. We need to remind state officials who oversee substance use services of the importance of prevention, including verbal screening and early intervention for youth, as part of a holistic approach to substance use disorders.

In 2017, federal advocacy is also needed to secure an appropriation for other $500 million authorized for opioid services in the Cures Act. Similar advocacy is needed to shake loose the money to treat maternal depression and to train more people to treatment mental illness and substance use disorders.

Meanwhile, the portions of the law designed to reduce inequities in treatment for substance use disorders and mental illness also require the federal government to issue new regulations and develop an action plan to coordinate federal and state enforcement. While President Trump has said the nation needs to address the opioid epidemic, he has been more outspoken about reducing regulation and government “overreach.” Advocates must speak up loudly and clearly for more enforcement of the law requiring parity in mental health and substance use disorders treatment vis-à-vis treatment for physical illnesses. 

New data last week highlights the continuing toll of the opioid epidemic: More than 33,000 deaths from overdoses last year. The new funding for state opioid grants and better enforcement of parity is critical to stopping this tremendous loss of life. But we also need to keep the expanded insurance coverage and access to services that 22 million people gained through the Affordable Care Act (ACA), or the death toll will only get worse. In addition to the opioid deaths last year, alcohol and non-opioid drugs contributed to more than 100,000 other deaths and untreated substance use costs the nation $400 billion annually in crime, health, and lost productivity.  

The best holiday gift we could imagine would be for the Trump administration and Congress planning to give up their plans to repeal the Affordable Care Act.

This is the second blog in 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.

In 2015, Belhaven, North Carolina Mayor Adam O’Neal and supporters from 11 other states set out on foot for their second 300-plus mile trek from his rural town to our nation’s capital to draw attention to an important issue: rural communities in danger of their hospitals closing.

The walk idea was sparked when O’Neal’s local hospital, Vidant Pungo, closed its doors in July 2014. For many in that small town, not only were those hospital jobs lost, but the nearest hospital is now 30 miles away. Sadly, this is a scenario being replicated all across America. A major source of rural hospitals’ financial stress can be traced to their state decisions to turn down federal funding to cover more people through Medicaid. With some Republicans in Congress and the incoming Trump Administration bent on repealing the Affordable Care Act (ACA) with no plan to replace it, we seem to be moving further from finding a solution to this crisis.

For the 50 million Americans living in rural parts of the country, accessing health care has often meant facing a variety of barriers: difficulty making an appointment with a provider or specialist, traveling long distances to the nearest hospital, and a high rate of local hospitals closing their doors. People living in rural areas will have even more to lose if the incoming administration dismantles the gains we've made under the ACA.

Figure A. Rural Counties Across the U.S.

In the past six years, while millions of Americans have benefited from the ACA, Americans living in rural areas have made more progress under the ACA than the general population. People living in rural communities saw a 7.2 percentage point increase in coverage from 2013 to 2015, compared with a 6.3 percentage point increase for urban individuals. Of the nearly 2 million rural customers who bought health coverage through the ACA Marketplace in 2016, about 9 out of  10 rely on tax credits to make their coverage affordable. Also, because of the ACA, the share of rural Americans who cannot afford necessary care decreased by six percentage points. In real terms this means that families are able to have coverage regardless of their health status and are able to take advantage of financial assistance to make it possible.

But now these much-needed health care gains for rural communities are under threat. Congressional leaders and the incoming administration have indicated the first item on their agenda is repeal of the ACA without a replacement plan (including a repeal of Medicaid expansion). Rural Americans’ health coverage and livelihoods could be hit especially hard.

In addition to historical barriers to care, rural America’s struggles with health care are rooted in policy decisions that have left them worse off. For example, rural individuals are concentrated in states that have resisted reforms available to them under the ACA, like Medicaid expansion. These state decisions have had significant implications: more than a million rural individuals fall into the Medicaid coverage gap and many hospitals in rural areas are unable to draw in the benefits of a more insured patient mix. This is a large reason why more than 70 rural hospitals – most located in non-expansion states – have shut down since 2010. Many more hospitals are at-risk of closing because of financial pressure, in which Medicaid expansion would provide a lifeline. Hospitals are important employers and contributors to the local economy, so these hospital closures are happening to rural communities that can least afford to lose these economic benefits. Our rural communities know all too well the struggles of keeping their communities healthy and safe. Any reforms undertaken on a large national scale should improve health care, not put it in a state of uncertainty (Figure B). 

Figure B. Why the ACA is A Critical Lifeline for Rural Communities

Repealing the ACA without an adequate replacement would shut off any hope of saving these vulnerable communities from additional hospital closures. ACA repeal would also deny a pathway for individuals to gain affordable coverage and endanger gains made in rural communities in states that have embraced the health law.

One state with a lot at stake is Kentucky, which closed the coverage gap and set up its own state-based exchange under the ACA. Because of these decisions, the state’s uninsured rate dropped from 20 percent in 2013 to only 7.5 percent in 2015 – one of the biggest successes in the nation. Rural areas of Kentucky, which have been hard hit by poverty and poor health, disproportionately benefit from these gains in coverage. Ending the health law could be detrimental to in places with a high share of rural communities like Kentucky and Louisiana as well – which also closed their coverage gap in 2016 – where many have been able to obtain health insurance for the first time and use important preventive services that are shown to improve health and cut health costs over the long-term.

Communities are only as healthy as the people that comprise them. When people are healthy, they are able to raise thriving families and contribute to their local economies. This could not be truer in rural America, where the communities here would be in some of the greatest danger if the ACA is repealed without an appropriate replacement plan that protects and expands on the coverage gains of the last six years. 

On December 1, Community Catalyst hosted the third webinar in its series on Health and Housing – “Aging in Place: Housing and Health Integration for Low-Income and Chronically Ill Seniors.” Two resources are now available – both a recording of the full webinar and the slides presented. The three presenters shared various state and local examples of innovative and successful practices to integrate support for safe and continuous housing with well-coordinated home-based care and services for vulnerable older adults with complex and chronic conditions.

Taken together, the speakers’ presentations make clear the centrality of adequate and sustainable housing as a vital social determinant of health for vulnerable older adults, and highlighted new partnerships across communities and service sectors that are emerging to address needs in this area in comprehensive and person-centered ways.

The timing of this webinar coincided with the recent release of a Center for Consumer Engagement in Health Innovation issue brief that bears on this topic, Bringing Independence Home: Housing-Related Provisions Under Medicaid 1915(c) Home and Community Based Services Waivers. Many of the best-practice approaches examined in six states discussed in this brief can be generalized beyond this specific type of Medicaid waiver, to address the issues presented in the webinar. 

The three webinar presenters featured in the recording are:

  • Robyn Stone, Executive Director of the Leading Age Center for Applied who discussed HUD-assisted housing facilities, with an example from an innovative model in Vermont
  • Nancy Archibald, Senior Program officer at the Center for Health Care Strategies, who shared examples of state approaches in California , New York, Tennessee and Oregon

  • Marty Lynch, Executive Director of Lifelong Medical Care in the San Francisco Bay Area, which provides services to vulnerable older adults through 15 clinical locations

We were very excited to see the highly multi-disciplinary registration for this webinar which in itself speaks volumes about a growing convergence, from many quarters, of folks who work with vulnerable populations, all raising the vital connections between health and housing. The 250-plus participants came from advocacy groups in the health or housing spheres, direct service providers at community-based organizations, hospitals, public health departments, managed care organizations, legal services staff, health plans and government. Community Catalyst is energized to be helping build bridges in this movement toward new and synergistic approaches to supporting older adults living according to their preferences in the community setting. 

There will be additional webinars in our Health and Housing series which will be announced in the months ahead to continue this conversation, so please stay tuned! 

This is the first blog in 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.

One of the great joys of my work over the last several years has been working with our advocacy partners from the disability community here in Massachusetts. It’s been through their eyes that I’ve come to deeply appreciate the essential nature of Medicaid and the Affordable Care Act to this population. That’s why I am deeply troubled that the results of one election could undermine critical aspects of the infrastructure that allows millions of people with disabilities to live independently and with dignity.

Just the Facts, Ma’am

So who is this population? According to a 2015 report from the Centers for Disease Control and Prevention, 53 million - or one out of every five - adults in the United States live with some kind of functional disability. This includes difficulty walking, seeing, hearing, remembering, doing errands, dressing or bathing. The report also revealed that Black and Hispanic adults were more likely to have a disability than White adults. Additionally, those with lower education and income levels, and those who are unemployed were also more likely to have a disability. And it’s because of this strong correlation between disability and poverty that we must look first at the major role Medicaid plays for the population.

Medicaid Matters… More Than Ever

Medicaid serves as a critical safety net for the 10 million+ kids and adults who qualify for the program on the basis of a disability. These people, who represent approximately 15 percent of all Medicaid beneficiaries, live with a wide range of physical, mental health and/or functional disabilities.

One of the reasons Medicaid is so critical to people with disabilities is its coverage of long-term services and supports (LTSS). Indeed, it is the only public or private program to cover LTSS.  And increasingly these services are being provided at home or in the community, rather than in institutions. Home and community based services allow people with disabilities to live independently in their homes and with dignity. It also allows them to maintain relationships and pursue meaningful work. This is what’s required by law and what’s desired by the vast majority of beneficiaries with disabilities.

As critical as Medicaid has always been to people with disabilities, the ACA provided new and faster pathways to eligibility. This has been particularly true in the 32 states that expanded Medicaid thereby allowing even greater numbers of people with disabilities to enroll in the program.

Innovation Nation in Peril?

With the creation of the Center for Medicare and Medicaid Innovation through the ACA, The Centers for Medicare and Medicaid Services (CMS) began investing in targeted experiments aimed at achieving the Triple Aim: better care for the individual, better care for the population and lower health care costs. For people with disabilities, this has meant the opportunity to have better coordinated care and improved access to LTSS that prevents unnecessary hospital and nursing home admissions. Examples of ACA-sponsored innovations that benefit people with disabilities include:

  • The Dual Eligible Demonstration Projects: Through this initiative, CMS is working with states to test two models to integrate primary, acute, behavioral health and long-term services and supports for Medicare-Medicaid enrollees and better align the financing of the Medicare and Medicaid programs.
  • Initiative to Reduce Hospital Readmissions Among Nursing Home Residents: This effort aims to improve the quality of care for people residing in nursing homes by using evidence-based clinical and educational interventions with the goal of reducing avoidable, and expensive, hospitalizations.
  • Community-Based Care Transitions Program: This program seeks to improve transitions of Medicare beneficiaries from the inpatient hospital setting to other care settings, to improve quality of care, reduce readmissions for high-risk beneficiaries and document measurable savings to the Medicare program.

The future of these and other innovations that improve care for people with disabilities and other vulnerable populations is most certainly in question.

Private Market Protections

Finally, for people with disabilities who have private insurance, several well-known (and popular!) ACA provisions are particularly important. These include the prohibitions against:

  • denying coverage for any reason, including pre-existing health conditions
  • lifetime monetary caps
  • charging consumers different rates based on their health status or claims history

Additionally, the ACA added two key nondiscrimination provisions that provide important protection for people with disabilities in the individual and small markets, namely:

The Bottom Line: Nothing About Us Without Us!

The results of the 2016 election create new threats to some of the most fundamental supports that the tens of millions of people with disabilities in our country rely on today. Together, we must work to protect Medicaid and Medicare and the continued investment in delivery and payment reforms that seek to improve the programs rather than tear them down. The rallying cry of the disability community, “Nothing About Us Without Us,” is particularly fitting as we enter the fight of our lives: for health care justice.

One curious feature of our current moment in health policy is how divergent the impending course of action pledged by Republicans in Congress and the incoming Trump administration is from the preferences of major health care industry stakeholders. Dominant models of public policy making assume that the preferences of large economic stakeholders in a given policy area will exert a lot of sway over the outcome. To be sure, every interest group has something(s) they want to change about the Affordable Care Act (ACA), but there is very little appetite among providers, hospitals or insurers for rolling back coverage. For example, a recent survey in Modern Healthcare found overwhelming opposition from health care CEOs to repealing in the ACA without a replacement at the ready. Yet that is the course the Congressional Republicans seem ready to embark on – inflicting serious pain in the process, especially on providers (not to mention the millions of Americans who stand to lose coverage).

It seems hard to imagine a parallel in any other industry. (Of course, the banking industry didn't exactly love the Dodd-Frank bill, but its passage was only made possible by the self-inflicted meltdown of the industry). The present situation is so unusual that it demands an explanation. I don't presume to be able to peer into the minds of the repealers, but I think there is some combination of three things going on:

  1. Ideological extremism. An anti-government ideology is so profoundly held within most of the Republican leadership in Congress today that pursuing fervently desired goals is totally unmoored from considering any real-world consequences. Thus, the ACA must be repealed “because-government.” The real-world harms – the rise in medical debt and personal bankruptcy, the erosion of hospital finances, the increases in mortality – are just not germane.
  2. Health care as "piggybank." The money for touted big tax cuts for the wealthy and increased military spending has to come from somewhere. With federal discretionary spending already pared to the bone, there just isn't another major source of money beside the health realm to tap in order to pay for these "more important" priorities.
  3. “The dog catches the car” problem. For years, Congressional Republicans have been able to score political points railing against the ACA and passing veto-certain repeal measures without having to deal with the pesky problem of figuring out what would come after. The election of Donald Trump caught pretty much everyone by surprise, but it is far too late now to moderate the rhetoric. Repeal has been repeatedly promised and now, with control of both houses and the presidency, come January, the promise must be fulfilled regardless of the problems it might cause. There is no room for backtracking.

Are Republicans Serious About "Replace"? We'll Find Out Soon

To be fair, there are some real ideas out there on the Republican side about how to replace some provisions of the ACA. For example, various policy makers and conservative academics have proposed a variety of alternatives to the individual responsibility requirement, including continuous coverage, auto-enrollment and late enrollment penalty. Different ways to design financial assistance and minimum coverage are also possible (not to say that these alternatives would work better than the ACA). The problem is how these ideas interact with the "piggybank" scenario (see #2, above). Any serious alternative requires money. If the first thing the new Congressional leadership and incoming president do is pull a ton of money out of the system, it will be an early sign they are not serious about health policy and that repeal is just a stalking horse for transferring wealth up the income scale.

Now Is the Time to Speak Up!

It cannot be overemphasized that the threat to create chaos in health care for millions of Americans extends far beyond proposals to roll back the coverage gains made by the ACA. Enormous cuts to Medicaid are also on the table. Even Medicare is not safe, a fact underscored by the recent comments of Representative Tom Price, thought to be a leading contender for the top job at Health and Human Services under a Trump administration, who confirmed that the efforts to overhaul (aka cut) Medicare would begin in 2017. It is fair to say that there is no electoral mandate for these cuts to Medicaid and Medicare, but the American people may very soon find these programs at risk, nonetheless.

The takeaway is that while the ACA may be first on the chopping block, Medicaid and Medicare will follow closely behind unless we mobilize now to save these vital programs. Members of Congress are saying they aren't hearing from people complaining about repeal, so it’s crucial for all of us to raise our voices loudly right now.

Let me tell you about a consumer I’ll call Marie.

Marie lives in California and has End-Stage Renal Disease. She needs to get to a clinic three times a week for dialysis. Marie doesn’t have a car or any family to drive her, and she can’t possibly afford a taxi. She could take public transportation, but she would have to take three different connecting buses in each direction. That would take her two hours each way, and she’s just not well enough for that. 

The good news for Marie is that she’s a Medicaid enrollee, and Medicaid has a benefit designed just for her situation. It’s called Non-Emergency Medical Transportation (NEMT), and the purpose of the benefit is to help low-income people get to their medical appointments. The logic behind the benefit is simple. It is more cost-effective and results in better health outcomes if people can get to their primary care and other outpatient appointments, as opposed to letting a health problem fester until it escalates into a crisis and they end up in the emergency room. This is why Medicaid provides transportation services to qualified enrollees to help them maintain their health.

That’s the good news. The bad news is that this service doesn’t seem to be working very well for Marie, and the problems with NEMT benefits transcend state boundaries. At the Center for Consumer Engagement in Health Innovation, we hear from advocates in numerous states who describe consumers struggling mightily to access NEMT benefits. The problems consumers describe are startlingly similar. Difficulty scheduling rides. Drivers who show up hours late, or not at all. Consumers left stranded at a doctor’s office with no one coming to take them home. NEMT is a critically important benefit, but if it’s not working properly, it doesn’t do anyone any good.

Over the last year, the Center and our friends at Justice in Aging have been working on an issue brief that describes the state of NEMT benefits around the country. The brief looks at how we got here and what some of the problems are with the service. Most importantly, the brief offers recommendations for policymakers that could help to improve the service and make sure it works for consumers.

Imagine Marie having to negotiate this service - the late drivers, the drivers who don’t show up at all, the missed appointments - three times per week, every single week! All just to stay alive and out of the hospital. We can do better, for Marie and for other consumers who desperately need this service.

Take a look at our brief! And if you’re a consumer advocate who would like to learn more about the Center’s work on NEMT, please contact Andi Mullin at


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