I’m not quite a single issue voter, but when it comes to primaries, I’m pretty close. Needless to say, the main issue that helps me decide which Democrat to vote for is disability rights. I’m not under any illusions – most primary voters aren’t moved by the issues that I am. But that motivates me to let disability issues influence my vote more than ever: after all, if even disability rights advocates don’t vote based on our issues, how can we possibly convince politicians to care about them?
Hillary Clinton’s strong disability policy proposals, for which she consulted with a broad array of disability rights leaders, led me to prefer her over Bernie Sanders. Even though many felt that Sanders was the more progressive candidate, most disability advocates have long experience with the reality that disability rarely makes the list of standard progressive priorities. The surest assurance that a candidate will endorse disability rights friendly policies isn’t their alignment within the Democratic Party’s internal political conflicts: it is the specific promises they make to people with disabilities and our families.
It is with that in mind that I have decided to vote for Rushern Baker over Ben Jealous in this Tuesday’s Maryland Democratic Gubernatorial Primary. I will, of course, vote for Jealous in the general election if he should win the nomination. But after reading each candidates’ health policy proposals, I find myself both concerned with some of Jealous’ positions and cautiously optimistic about Baker’s.
Ben Jealous’ Support for Expanding Nursing Home Funding Could Harm People with Disabilities
The central component of Jealous’ health policy platform is to implement a single-payer health care system in Maryland. Although single payer and “Medicare for All” has become the rallying cry of large parts of the left, those phrases alone provide relatively little information about what a health care system would look like. It is possible for both single- and multi-payer systems to improve or worsen Maryland’s health care relative to the status quo – and anyone who works on health policy is aware that full implementation of single-payer would require significant changes from the existing Medicare program. To his credit, Jealous provides details about his single-payer proposal: MD-Care. This gives us a chance to evaluate them.
First, the good: Jealous likes Maryland’s All-Payer Rate Setting system, which requires hospitals to charge patients the same price regardless of their insurance. This is one of the best aspects of Maryland’s health care system, and Jealous is absolutely right that it makes Maryland a better fit for a single-payer experiment than other states. Jealous also supports expanding the All-Payer model to non-hospital providers (something that could be done with or without single payer). This is a good idea that could seriously improve access to physicians and other non-hospital providers for those on Medicaid. Jealous deserves serious credit for a sophisticated understanding of the unique circumstances of Maryland’s health policy. He provides a detailed analysis of how the state might approach a policy goal that most candidates just toss around as a buzzword.
Unfortunately, that sophisticated analysis is worryingly absent on the single most important issue for people with disabilities: long term services and supports. Jealous’s health policy platform has only one mention of this issue:
“Today’s nursing homes are far different than those of the past. Our unique All-Payer Progression Plan and the ACA are driving rapid changes to our healthcare delivery system. Marylanders from all walks of life rely on these facilities, but Medicare only covers the first 100 days of stay and then other payers, often Medicaid, must pay the bill. MD-Care will look to ensure that vulnerable residents, parents or grandparents, young adults paralyzed from a motorcycle accident, or siblings with a developmental disability, can afford the around-the-clock quality care they deserve. Care delivered by home health aides and assisted living facilities will also be explored.”
As many readers of this blog know, many seniors and people with disabilities depend on Medicaid-funded services to pay for services to help with things like getting dressed and out of bed, assistance in other activities of daily living and more complex support needs, like help finding and keeping a job or navigating life in the community free of danger. Historically, one of the disability rights movement’s most important goals has been moving people and money out of nursing homes and other institutions into community-based supports people can receive in their own homes.
These issues were dramatized last year by ADAPT’s action against Trumpcare’s severe cuts to federal Medicaid funding. While many progressives loudly cheered ADAPT’s activism at the time, most were unaware that the organization has a long history of protesting both parties on this issue. ADAPT and other disability rights activists don’t just stand for protecting Medicaid funding – they also stand for changing how it is spent. Nursing homes and institutions segregate people with disabilities from society, depriving people of autonomy and the kinds of basic choices about when to eat and sleep, who to talk to and how to live life that others take for granted. Throughout the country, disability rights activists have clashed with the nursing home lobby on how to allocate public funding.
Expanding funding for nursing home stays would increase the likelihood that seniors and people with disabilities would face institutionalization. Jealous affords home care services only the most cursory reference and groups them with assisted living facilities – congregate settings that often have more in common with nursing homes than true community-based services. He makes no reference to Maryland’s Community First Choice state option, the state’s community-based attendant care program for people with disabilities, one of only five nationally. While Jealous took the time to put together a detailed vision for the future of Maryland health policy, he largely ignored the issues that people with disabilities care most passionately about. Worse still, his only substantive comment was a full-throated defense of the nursing home industry that has opposed disability rights activists at every turn.
A call to expand nursing home funding is an especially bizarre position to take in a state like Maryland, which is behind on community services for seniors and people with physical disabilities. Maryland spent 56.2% of its Medicaid Long Term Services and Supports (LTSS) expenditures on community-based care in 2016, putting it 18th in the country – not great, but not awful.
But this broad number hides the significant disparities between populations in how Medicaid allocates LTSS dollars. The State has done a fantastic job at shifting towards community-based care for people with developmental disabilities, spending 97.8% of its funding for this population in the community (placing Maryland 7th in the nation). This success hides the state’s failure for people with physical disabilities and seniors, who receive only 28.5% of their funding in community-based supports (32nd in the nation).
This has concrete consequences. According to the Kaiser Family Foundation, as of 2016, 23,000 Maryland seniors were on a waiting list to receive community-based services. This means that 23,000 seniors must either spend their lives in the isolation and loneliness of a nursing home, rely on uncompensated family caregivers, or risk going without support altogether. Contrary to Jealous’ platform, nursing homes remain isolating and overused, unnecessarily segregating tens of thousands of Marylanders from their families and communities.
Maryland’s relatively poor record at supporting seniors and people with physical disabilities in the community makes Jealous’ call for expanding nursing home care and his relatively cursory acknowledgement of community-based options inexcusable. Though it may sound complicated and obscure, this funding is the main source of almost all of the services Marylanders with disabilities rely on. It represents one of the main areas of state policymaking under the Governor’s control, encompassing almost 30% of Maryland’s Medicaid spending and impacting tens of thousands of people across the state in life-changing ways.
Despite a very sophisticated analysis of the state’s medical system, Jealous and his team are either woefully ignorant of disability services or weirdly passionate about nursing homes at the expense of in-home support. Either way, I can’t justify voting for him in the primary.
Rushern Baker’s Health Policy Platform Emphasizes Home and Community Based Services
Baker’s approach to health policy is considerably less ambitious than Jealous. Rather than propose a single-payer plan, he talks about building on the Affordable Care Act with incremental measures, like allowing Marylanders without insurance to count their penalty payments towards next year’s insurance premiums. Interestingly, Baker saves his most detailed proposals for disability and aging services:
“Improve Support For Long-term Care And Caregivers
Maryland can do better supporting individuals and families who find themselves thrust into the role of caregivers. More and more people find they must manage multiple medications, administer injections, provide wound care, operate highly specialized medical equipment, manage special diets, and constantly paying attention to the psychological well-being of a loved one who is battling a disease, aging, or catastrophic physical disability. Unfortunately, demands from work and life obligations don’t slow down and often pressures increase as finances become strained. Rushern Baker knows the battle as a primary caregiver for his wife Christa who suffers from early-onset dementia. While he’s blessed to have great support systems and coverage, he interacts with and reads emails from many who feel forgotten and need help.
Here’s what he’ll do as Governor:
Maryland can update their Medicaid programs to make sure that home- and community-based services are available, especially training and emotional support for caregivers.
Maryland can “use their licensing and certification authority to marshal a well-trained care delivery workforce” and increase the choices people have in residential settings, especially availability of advanced health monitoring and sanitizing technology as well as qualified visiting aids and nurses.
Maryland can and will evaluate and incentivize the private sector to offer more flexible work arrangements for caregivers especially telecommuting; innovate shift arrangements and use of leave.
Maryland must reevaluate its options to make sure their insurance regulations allow “a range of accessible products” which can make life easier for both patients and caregivers
Maryland can and should support access to 24-hour caregiver support services such as consultations via web video, emotional consultation, and evaluating our lending and residential health care modification standards to assure inspections, cost, and execution put the needs of caregivers and patients first.”
Baker offers a far more detailed proposal on this issue than Jealous does. He seems familiar with the existence of Home and Community-Based Services (HCBS) and describes ways in which he would improve them, whereas Jealous limits himself to a throwaway comment that “home health aides and assisted living facilities will also be explored.” The emphasis he places on community services is a marked contrast to Jealous’ passionate defense of nursing home care.
Baker’s platform here is by no means perfect. He doesn’t commit to ending Maryland’s waiting lists for HCBS and focuses his rhetoric on “caregivers” rather than people with disabilities ourselves. There is definite room for improvement. But one is left with the impression that Baker is invested in improving access to HCBS for people with disabilities and understand why people with disabilities and families want support to stay at home, not nursing homes.
This matters – disability rights activists are very familiar that the general progressive stances of a politician won’t necessarily mean they support our issues. Unfortunately, disability remains left out of much of left politics. To evaluate a candidate’s likely actions on disability, it is important to look at their actual promises and commitments to the disability community, not just their broader ideological stances. Some have taken time to learn about our issues, either out of personal investment or solidarity. Some have not. This should matter to us.
Whoever wins the primary, I hope they will work with state disability rights leaders to craft a more detailed message to the disability community. Both major candidates could stand to improve. Nonetheless, no issue is more important to the disability rights movement than continuing the fight to bring people with disabilities out of nursing homes and into our own homes. On this issue, there is no contrast. Because of that, I look forward to voting for Rushern Baker for the Democratic nomination for Governor of Maryland this Tuesday.
Don’t forget to vote!