This month, we sat down with Sean Luechtefeld, Communications Director at ANCOR (American Network of Community Options and Resources), to discuss the effect of COVID-19 on people with I/DD and the behavioral health challenges posed by the pandemic. ANCOR, a national non-profit trade association, represents providers of services to individuals with disabilities and provides support through advocacy, leadership, community building, and professional development.
CapGrow Partners: What is the availability of COVID-19 testing for people with disabilities? Are they able to receive adequate testing?
Sean Luechtefeld: COVID testing is available at public facilities, such as drive-through testing in parking lots, or designated testing centers. Some healthcare workers can receive results in as little as three hours; however, for many Americans, it can take up to five days or more to get test results back. Access to testing depends on the unique needs, challenges and limitations for the person seeking testing; in some cases, eligibility to be tested is restricted. When the virus first became well-known, an individual had to have every single symptom and have had contact with a positive carrier of the virus or have traveled to a country with a verifiable outbreak to be eligible to be tested.
Eligibility for COVID testing has recently become more lax, but testing is not possible in every geographic area, and in rural areas it may be harder to get tested. Communities with a lack of access to essential items and services also don’t have access to adequate testing. Testing for COVID-19 does not necessarily represent a more significant challenge for people with disabilities, although they may have some support needs that can be challenging. For example, if people with I/DD can’t walk or drive to a nearby testing center, that may complicate their ability to get tested. Many people with I/DD may need a direct support professional to take them to a designated testing center, for instance.
CGP: Are people with disabilities considered essential workers, and how are the unemployment layoffs affecting those with I/DD?
SL: People with disabilities are only considered essential workers depending on what they do, like everyone else, and therefore are facing similar impacts as other non-essential workers. They’re disproportionately affected by layoffs due to the virus right now, because they mostly work in industries, such as the service industry, that have been particularly hard-hit (think restaurants, hotels, coffee shops, bars, etc.). Businesses across the country are scaling back on overall staffing, so they are cutting part-time workers, which are the positions a lot of people with I/DD hold. There’s a provider in Minneapolis, MN, that shared that they were supporting over 100 people with I/DD in competitive employment; and now, they are supporting just under 50 individuals because over half of them have now lost their jobs due to the virus.
CGP: Are DSP caregivers and group home workers considered essential workers?
SL: Right now, this depends on the law and governors’ respective orders for their states, but the consensus is that they should be considered essential workers. States have been handling this definition differently… so this classification has been clearer or less clear, depending on the respective state. ANCOR has advocated for governors to specifically identify caregivers/DSPs as essential workers, which would give them access to certain benefits of the CARES Act and ensure their unfettered access to get to work, despite stay-home orders. ANCOR has also lobbied the Department of Labor, the Department of Health and Human Services, FEMA and others for regulations related to emergency paid leave, staff stabilization funding, access to PPE and more.
CGP:Do group home providers and workers have access to PPE (personal protective equipment), and what are the challenges they are encountering in finding adequate PPE?
SL: Right now, providers and DSPs are having a horrible time finding PPE. DSPs are truly healthcare workers; they just focus their efforts in a different environment than a hospital or medical facility. Most group homes and residential services will have clinical staff, nurses, etc. on payroll. But even those workers who don’t have a medical background still deliver essential health services; they administer medication, help with personal hygiene, and assist with activities of daily living for those with I/DD. In turn, some of the risks are different. Medical professionals in hospitals, for example, might be with COVID-positive patients for a limited amount of time; some DSPs, on the other hand, are with infected people in group homes all day. They are often sheltering in place with infected people for 14 days, and will probably get sick without appropriate protective equipment.
Some providers are trying to secure adequate PPE, but suppliers either don’t have it at all or are making it too expensive, so providers are struggling to outbid other organizations. They are paying a premium for this equipment, which many of them don’t have the funds for, since many of these organizations rely on money from Medicaid reimbursement. It seems as if the states and federal government aren’t doing enough to ramp up production of PPE, nor are they making it any more affordable. The PPE is going to the highest bidder, which could leave poorer areas and organizations with smaller budgets behind.
CGP: What kind of financial resources do providers need right now, and what are the biggest needs for these organizations?
SL: The biggest needs right now are PPE, money to secure PPE, and money to retain DSPs. DSP turnover rates were already high, but they are much higher now. Many are afraid to come to work, may need to stay home with kids who are no longer in school, or may need to quarantine themselves if they are feeling sick.
Staffing residential programs is the main issue. Organizations are finding it increasingly difficult to preserve revenue streams, as Medicaid reimbursement is becoming more difficult. Many organizations didn’t have adequate cashflow to support their businesses in the event of a revenue disruption, with many reporting they couldn’t keep the doors open for even a month if their revenues were disrupted. Organizations need increased Medicaid funding during this pandemic, especially because many day programs have been shuttered. Support now will ensure these programs and services will be available beyond the crisis.
It’s difficult to say which of these programs will be able to open up once the coronavirus pandemic has ended, but we know some services are being discontinued permanently. We hope that with adequate financial resources in the future, these programs and organizations will be able to reopen and rehire, but that of course won’t happen in all cases. One D.C.-based provider has increased pay by $4 an hour for DSPs, for example, but this is without increased funding from Medicaid. More financial resources is the only way to help ensure these organizations and programs survive through the crisis, but they will have to rebuild budgets and financial and service delivery models in the future to account for the extra money spent.
CGP: How are organizations and providers holding onto DSP workers amidst this crisis?
SL: Providers are having to restructure their policies to be more lenient and flexible. Some organizations are providing flexibility for those who are unable to come into work by letting them use their paid leave to take time off. One provider we heard from had 40 DSPs who raised their hands and said they would make themselves available no matter what the circumstances, because they feel called to serve and support people, especially during a crisis. One Long Island-based service provider shared that they have doubled the pay for those who do come into work, despite not having funding from the state or federal government to do so. Another innovation comes from Washington, DC, where providers in the area have staff-sharing agreements that they execute when the DSP workforce is depleted in times of emergency.
ANCOR is lobbying at the federal level to get money allocated from the CARES Act that was designated for essential health and social services to include community-based providers of I/DD services. This money should absolutely be going to Medicaid-funded providers. Beyond federal resources, states can use the 1135 waiver or the Appendix K waiver to open up funding to help providers manage day-to-day operations, and to give themselves more flexibility for “programmatic management.” Some states—though not all—are doing exactly that to help with additional provisions outside of the federal government. They are adjusting appropriate ratios for staffing and employing telehealth options for when DSPs are absent and cannot go to the homes.
CGP: How are advocates bringing these issues to the government? What is ANCOR doing to raise awareness of these issues?
ANCOR is lobbying with the federal government by writing letters to the Centers for Medicaid and Medicare services, the Department of Labor, and the Department of Health and Human Services. We have been mobilizing ANCOR members to send messages to their respective members of Congress to support funding that has been passed and legislation that is being considered. We know that neary 35,000 people have taken action in these regards in response to our action alerts. ANCOR has been working with congressional offices to help draft specific language to be included in the fourth round of the relief package soon to be debated, so that I/DD services and our essential workforce are funded. ANCOR isn’t working or advocating directly at the state level; however, we have urged the National Governors Association to direct its members to define DSPs and provider organization staff as essential workers.
CGP: Are DSP caregivers and other workers who support people with disabilities going to receive increased pay and support from the government?
The $100 billion allocated in the CARES Act should support this, but vague language in this legislation says these funds go to “healthcare providers,” but then fails to define who qualifies as a healthcare provider. Medicaid-funded providers (such as I/DD services) are providing essential healthcare services, but aren’t specified in this legislation like they should be. The first $30 billion spent from this Act went to Medicare services, but not Medicaid services. The next wave of funding went to hospitals, even some Medicaid-funded hospitals, but not to those facilities that specialize in in-home healthcare or the services being delivered in people’s homes or in community-based settings. Legislation is needed to define this specifically.
Providers in home- and community-based services haven’t been directly considered in this, and ANCOR wants HHS (Health and Human Services) to distribute an additional 6.2% of providers’ Medicaid funding to providers, thereby mirroring what HHS did to support Medicare providers in the first tranche of funding that was announced in mid-April. Right now, ANCOR hasn’t gotten any kind of commitment from the government about this, nor the clarification that Medicaid-funded providers be included in this appropriation, but we’ll advocate even harder in the fourth-round funding package if no commitment is made. Organizations need this money now, so they can adequately provide care and tests. Many people with disabilities are ending up in hospitals for COVID-19 treatment when they could otherwise receive care at home; and in the most horrific cases, people are dying because they lack the support they need.
CGP: Small businesses with less than 500 employees are eligible to receive funding from the stimulus package the government approved. What about organizations that support people with disabilities who employ more than 500 people?
SL: This was part of the Families First Coronavirus Relief Act, which provided funding for small businesses that acted as loans. In order to get this funding an organization would need to apply by submitting payroll costs for the previous eight weeks. If approved, the funding would give an organization the ability to continue to pay their workers, or at least be able to rehire them more quickly if they had to lay off employees. These loans would be forgiven if the borrowers meet certain criteria, making the loans function more like grants in some circumstances. For larger providers with more staff that are Medicaid-funded, the 500-employee cutoff is arbitrary; most of our members are nonprofit, low-budget businesses that rely on Medicaid to keep their doors open, and they employ large workforces, because that’s what it takes to support people in the community where they belong.
It seems that, as of April 16, 2020, the federal government had already depleted the entire small-business fund, but that’s to be determined. The government could possibly authorize more money for this fund, but that’s also to be determined as to whether they think this is necessary. This employee cap consideration can hinder the ability of larger provider organizations working with small budgets to access those resources.
CGP: Are provider organizations with services across multiple states having a harder time managing the virus, since regulations are different per state?
SL: A lot of organizations have created company policies that were designed for a unified standard of care across many states. Right now, some group home facilities are not allowing visitors from the outside to come to the group home, and where visitors are allowed, many are having their temperatures taken when they come visit and can visit as long as they aren’t showing symptoms. Most providers with services in multiple states are used to navigating states’ patchwork regulatory environments to ensure a high standard of care. For that reason, there shouldn’t be much of a difference between larger, multistate providers and their smaller, single-state counterparts: all are coming together to support people in the most effective and highest-quality way possible.
Additional Resources
ANCOR’s COVID-19 Resource Center has a wealth of information available to providers, including advocacy actions, federal policy, state policy, public health, and educational resources.
Kaiser Family Foundation has provided a Medicaid Emergency Authority Tracker: Approved State Actions to Address COVID-19, which enables providers to view approved SPAs, state-reported administrative actions, and waivers available by state.
The Small Business Administration (SBA) and Department of Treasury have provided a Guide to the CARES Act for those who wish to access more information on the programs and initiatives available to small businesses.