What’s Happening to MS Home Healthcare?

It’s likely you’ve heard about a shortage of home healthcare workers. While it’s easy to blame the pandemic for this unfortunate trend, the problem isn’t new. It comes down to basic math: There are more people who need home- and community-based services (HCBS) than there are qualified workers.

This trends away from facility- and residential-based healthcare services. By 2029, 4.5 million more HCBS workers will be needed to meet the demands of this growing population.¹ This includes many people in the MS community, a diverse cross-section of people of all ages and disability, who prefer to live and be cared for at home.

What can people with MS expect from home healthcare in the next decade?

Understanding the home healthcare scarcity

Because of the pandemic, HCBS workers face:²

• fears of contracting or spreading COVID-19
• vaccine requirements
• low or no hazard pay
• pressure to work overtime due to staffing shortages
• reduced census (less demand from patients due to COVID-19 fears)
• household changes, such as school-aged children at home in need of supervision

Yet other factors also explain shortages in home healthcare:^3-6

• lack of affordability
• benefits won’t reimburse
• low pay and few benefits create staff shortages and higher turnover
• personnel may be untrained for specialized needs (such as IV nurses)
• bad weather creates obstacle for workers
• coverage models for HCBS (such as Medicare) constantly change, altering the services one qualifies for
• recent transitions to new HCBS benefit models have resulted in service denial while complicating interpretations of benefits

MS home healthcare needs

Maybe you’ve enjoyed regular services from a single agency. Now they’re either overwhelmed or have changed service options. Or, you may only need services infrequently. When the need arises, you end up on a months-long waitlist. Or, home healthcare may be new to you in the face of new MS progression.

In any case, you may struggle to manage:

• injections, catheters, incontinence solutions
• medication administration
• activities of daily life (bathing, grooming, dressing, eating, errands, housekeeping, laundry, shopping, bill paying)
• MS-specific therapies (occupational, speech, physical)
• transfers (bed, chair, assistive device)
• transportation

Tips for accessing home healthcare

Below, you’ll find several general avenues for getting the help you need. Availability remains based on your healthcare coverage, budget, and location.

Shop around

A reliable one-size-fits-all home healthcare solution to manage your needs sounds dreamy, but it’s likely impossible to achieve these days. Even without a pandemic, it’s still hard to find reliable home healthcare, especially during emergencies and holidays. The next best thing? Contract two or more HCBS providers to handle different tasks.

Talk to your doctor

Let your MS specialist know if and when your service needs go unfulfilled. They can consult their own networks and point you in the right direction if you need to find new care or replace lost care.

Pay for private care

Often, really good home HCBS workers leave agencies to offer private services for hire. This allows them a better chance at a living wage, as agencies often take a large percentage of collected fees. A cash pay option may also make it more worthwhile for them.

Enlist family and friends

We often don’t want to “bother” others when we need help. But it’s important to communicate critical needs to loved ones, because they often can help.

Consider holding a meeting (live or virtual) to include friends, roommates, family members, neighbors, and coworkers. Tell them you need help—be very specific about what that kind of help looks like. Then, establish a list of tasks and volunteers. You may be surprised how many sign up when you ask. Granted, some requests (like catheter management) may be unrealistic. But just about anyone can handle non-medical assistance.

Ask volunteer agencies

These community resources serve a wide range of needs. From scout troops to volunteer caregiver groups to church organizations, you can seek help for household tasks, errands, and transportation needs.

Consult large organizations

• Check out two recent AARP articles to help you decide if and how you can afford home care and how to hire a caregiver^7-8
• PACE (the Program of All-Inclusive Care for the Elderly) is a Medicare/Medicaid program serving people ages 55 and older who can meet their healthcare needs via HCBS⁹
• The National MS Society offers their Guide to Home Care and Housing Resources; their booklet, Hiring Help At Home; and their guidebook, Caring for Loved Ones with Advanced MS: A Guide for Families^10-12.

Take heart

The Bipartisan Policy Center in Washington DC is poised to launch initiatives to improve access to long-term HCBS. The advocacy group especially seeks reliable service support for those with chronic illness and disability.¹³

In addition, the Better Care Better Jobs Act (HR 4131) anticipates a vote in Congress to expand access to HCBS under Medicaid.¹⁴