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Reflections on financial assistance in a pandemic.

By Allison Harrison, MSW, HFA Associate Director of Services

Gavin and Nieve* were making ends meet until the COVID-19 pandemic hit. Nieve lost two different jobs in 2020 when the companies that employed her lost business and laid off workers.

Gavin, who has hemophilia A, picked up additional work even though it was hard on his already damaged joints. Nieve found another job and good income until April 2021 when supply chain issues led to another layoff. Gavin鈥檚 income and Nieve鈥檚 unemployment benefits carried them through the summer of 2021 until Gavin had a series of bleeds and was let go because of his many absences from work. With only unemployment benefits, they scrimped where they could. They let the car insurance lapse, cut down on food expenses, let go of cable.

But sometimes when it rains, it pours. In August, Nieve caught COVID-19 and was hospitalized for 10 days. Then, Gavin was in a car wreck and, without insurance, could not afford to fix the car. Unemployment benefits ended in early September. And speaking of rain鈥攄id I mention that right before I spoke to them, a tree fell on their house during a storm?

I am on the services team at Hemophilia Federation of America (HFA). Our team operates the Helping Hands financial assistance programs (Emergency Assistance, Items Assistance, Inhibitor Support, Disaster Relief, COVID-19 Relief), Helping Forward program (for career and financial planning) and other resources for the community. We are social workers who spend our days hearing the needs of community members like Nieve and Gavin. The job is not just about determining eligibility, collecting information, processing applications and paying bills. It鈥檚 about listening, validating and supporting.

It鈥檚 our job to let someone know they are not alone in their struggles, affirming that it is OK to cry, reflecting back to them the ways in which they have been resilient and coped with difficult circumstances.

In between logging data in Salesforce and creating check requests, we are staying up to date on policies so we can provide the most useful information to our applicants: Are they getting the child tax credit? Do they know that they may qualify for a special insurance enrollment period? We track trends and brace ourselves for the end-of-month surge, the end-of-benefits surge, the holiday surge, the unexpected surge of referrals that tells us it is a tough time for our bleeding disorders family.

When the pandemic started in the U.S., we knew it would hit the community hard. On March 18, 2020, HFA received the first Emergency Assistance referral that mentioned the coronavirus. Within four weeks we created the COVID-19 Relief program. We secured funding, created the program guidelines and processes, built a new intake and client relationship manager structure, designed a web presence, publicized the program to stakeholder groups and onboarded colleagues to temporarily staff the program.

What we suspected, but could not have fully imagined, was the devastating impact it would continue to have on our community 18+ months later. It affects finances, mental health, employment, family dynamics, school, physical health and so much more.

As the death toll from COVID-19 in the U.S. compounded from 150,000 to 699,000 (and counting, with more than 2,000 deaths per day), community members鈥 challenges compounded, too. And referrals multiplied for Helping Hands and assistance programs across the country.

We have exhausted and refreshed HFA COVID-19 Relief grant funding three times and are currently approving COVID-19 Relief applications as needed with general Helping Hands funds. Helping Hands has paid 865 bills through COVID-19 Relief in the past 18 months, plus 330 bills for emergency assistance, 125 for items assistance, 20 for inhibitor support and 35 for disaster relief since January 2020. We receive a dozen referrals a week from hemophilia treatment center social workers, home health/pharmacy representatives and local bleeding disorder organizations.

As of October 1, electric, gas and water utilities are no longer postponing disconnections. Some applicants are calling us via Wi-Fi because their cellular phone service has been shut off. Several federal unemployment benefits offered through the American Rescue Plan Act expired September 4. Eviction moratoriums are only in effect in a handful of states. And families still have bleeds, hospitalizations, births and deaths, unexpected financial emergencies. The 鈥渢ypical鈥 emergencies are layered on to the ongoing emergency of the pandemic. Here are a few examples of the situations our community members face:

Robert* and Kanti* had a newborn who experienced bleeding issues right after birth. Robert had to miss work to care for their other children while Kanti and the baby were in the hospital. The missed paychecks left them without enough money for rent.

Diane鈥檚* daughter has hemophilia A. Two family members temporarily moved in with them to escape a hurricane, adding to expenses. Then the house was infested with bedbugs and Diane could not afford to replace her daughter鈥檚 bed.

With diabetes and a history of heart trouble, Shane*, who has von Willebrand disease, was at high risk for COVID-19. Plus, schooling for their children went virtual, so they decided to leave their job and stay home to avoid the risk of death from COVID-19 and help the children with online school. As a single parent, Shane needed help to pay the rent until they could figure out a new plan.

Francesca* has a rare platelet disorder. She cleans houses for a living and lost a lot of work because people did not want visitors in their homes during the pandemic. She is undocumented so she was not eligible for most benefits. Her water bill was two months overdue and at risk of disconnection.

Will*, who has hemophilia B, lost his mother and grandmother to COVID-19. In his depression and without their financial help, he lost his job, his car and his apartment. He lived in a tent while trying to find a lead on a new job or get approved for the Supplemental Security Income program.

LaToya* cares for her son who uses a wheelchair because of joint issues. Their SNAP food benefits randomly stopped eight months ago, but she is so overwhelmed with the health and work issues that she hasn鈥檛 been able to make the phone calls to get the administrative issue resolved.

The financial need in our community is persistent. The virus is relentless. The flow of referrals to our programs is continuous.

I do not know how long it will take for these beloved community members to recover鈥攆inancially and otherwise鈥攆rom the effects of COVID-19. All of us are still living in a pandemic while simultaneously trying to cope with and heal from its impacts.

What I do know is that Gavin and Nieve received HFA Emergency Assistance, COVID-19 Relief, and Disaster Assistance to cope with the multifaceted emergencies they faced over 18 months. All the community members in situations like the ones above spoke with a Helping Hands staff person who cared about them, and all received assistance from Helping Hands in one form or another.

Helping Hands must continue to provide help, and hope, to our community. We must ensure that funding flows to keep pace with the flow of referrals. We must be relentlessly generous and persistently compassionate. 2022 will mark 25 years since the Helping Hands program began. We have stood beside families who endured the HIV crisis, stock market and housing market crashes, hurricanes, global recessions and now a pandemic. With your support, we will continue to stand with families, whatever may come.

Donate to Helping Hands at
www.hemophiliafed.org/donate.


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