Many people will be surprised to know that nearly 10% of Minnesotans have some form of disability, whether physical, intellectual or developmental.

For those whose disabilities are serious enough to qualify for supportive services, most of them receive financial benefits through Minnesota's Medicaid program, which is funded through both federal and state dollars. The federal agency known as the Center for Medicare and Medicaid Services (CMS) sets the parameters for states to follow to administer their Medicaid programs, but there is still quite a bit of flexibility, each state’s Medicaid program is different.

CMS has established a series of waivers to allow States to operate certain provisions of their Medicaid programs outside the normal parameters. For people that are aging or have disabilities, there are Home and Community Based Services (HCBS) waivers that make it possible for those who would otherwise qualify for the levels of care provided by institutional settings such as hospitals, nursing homes or intermediate care facilities, to receive supportive services so they can live in home-like settings in the community. Approximately three-quarters of Minnesotans with significant disabilities receive support through HCBS waivers.

These supportive services can be delivered in a person's family home, in a day setting that is different than the person's home, or in a residential setting like a group home or foster home. Delivering these services requires a large number of direct support professionals (DSPs), whose job duties are incredibly variable, complex, and in some cases intimate. Depending on the needs of the person receiving supports, their DSP's responsibilities may include dressing, feeding, toileting, medical care, transferring from bed to wheelchair and back, shopping, driving and escorting to activities.

It may be surprising to learn that these caring professionals are paid very low wages - less than $13.00 per hour on average. With the rate of job growth and unemployment we were enjoying in the US prior to the current pandemic, there was a staffing crisis in Home and Community Based Services. Recruitment and retention of DSPs was very challenging, with half of new DSPs leaving their jobs in less than 1 year (fast food restaurant and retail positions typically paid more). Coupled with the extensive training requirements and regulations providers must follow, and the fact that their reimbursement rates are set by the state legislature, the workforce situation has had provider organizations operating in crisis mode for years.

Enter the coronavirus!

In less than a month's time, an industry that was already in crisis is now unsure of its viability through the next 3 months. Staffing has become even more challenging because many DSPs are either afraid to come to work out of fear of being exposed, or because they may have been exposed themselves and are self-isolating.

That means remaining staff have to work longer hours, including overtime, and in some cases work 24-hour shifts. Day programs, where people would go for services for several hours a day, have been forced to suspend their operations, which means the people are now in their residential programs 24 hours a day, adding to operating expenses, food budgets, and staff time. Shortages of cleaning supplies and personal protective equipment for medical care have hit these programs hard as well.

Where will our state's most vulnerable citizens go if these programs don't survive?

There have been some helpful actions taken at the state and federal levels, and some additional funding has been temporarily made available. But the future is still uncertain. The DSPs are not consistently included in lists of essential employees, so some benefits don't apply. Some benefits that have been instituted to support businesses don’t apply to these provider organizations.

The biggest concerns right now at the federal level are that it is not certain that any of the $100 billion Congress appropriated for emergency health and human services as part of the $2 trillion CARES Act is meant for Medicaid-funded providers. And there is still not a final opinion as to whether DSPs are considered health care workers under the Families First Coronavirus Response Act (FFCRA) and would therefore be exempt from expanded family and medical leave and paid sick leave due to COVID-19.

At the state level, while providers are following the Governor’s executive orders and recommendations from the CDC and Minnesota Department of Health, the biggest need is for an emergency rate increase to help HCBS providers keep up with increased costs of doing business related to the pandemic.

In times of uncertainty and high anxiety, Minnesota is known as a resilient state.

I hope we can all work together to see through this crisis and emerge as a stronger community on the other side. Advocacy organizations in the state, such as the Association of Residential Resources in Minnesota (ARRM), the Minnesota Organization for Habilitation and Rehabilitation (MOHR) and The Arc are working hard together to secure the necessary resources through legislative action. And in Washington, DC, the American Network of Community Options and Resources (ANCOR) is doing the same with Congress.

We ask the public health community to support us in these activities

Written by Ken Bence, MHA, MBA, Director of Research, Analysis & Policy, AARM (Association of Residential Resources in Minnesota) and MPHA Past President.

This blog post is for the Minnesota Public Health Association's National Public Health Week (NPHW) 2020 activities.