Article

Impact Feature Issue on Disaster Preparedness and People with Disabilities

Experiences of Direct Support Professionals During Hurricanes Katrina and Rita

Author(s)

Sheryl A. Larson is Senior Research Associate with the Research and Training Center on Community Living, University of Minnesota. She may be reached at 612/624-6024 orlarso072@umn.edu.

Angela King is Director of Program Development with Volunteers of America, Alexandria, Virginia.

On August 29, 2005, Hurricane Katrina struck, directly impacting every staff member of, and person supported by, Volunteers of America (VOA) of Greater New Orleans. In May 2006, the University of Minnesota interviewed Direct Support Professionals (DSPs) from two of VOA’s programs – Supported Living Services (offering family and semi-independent living supports to adults and children with disabilities) and Community Living Services (offering group homes for adults and children with developmental disabilities) – to learn what happened during the hurricane, what worked and did not work in the evacuation, why they returned to New Orleans, and suggestions for the future. Some of the findings are shared here.

Background

Before Katrina hit, VOA New Orleans employed 180 Personal Care Attendants who supported 122 individuals living in their own homes or with family, and 100 Direct Care Staff who supported 75 individuals living in 12 group homes. On August 26, when administrators realized Hurricane Katrina was going to hit with life-threatening intensity, an evacuation was initiated and the organization began moving staff and the people they supported to safety. The evacuation, expected to last just three days, stretched for months as large parts of New Orleans and surrounding communities became uninhabitable.

The individuals receiving Supported Living Services in their own homes or in their family homes followed individual evacuation plans, leaving with family members, VOA staff, or on their own. They were scattered throughout the southern United States in Mississippi, Florida, Texas, Tennessee, Arkansas, and other parts of Louisiana. Accommodations were difficult to secure, and they stayed in cars, shelters, hotels, trailers, or with other family members. Some contacted VOA affiliates and were assisted in securing temporary living arrangements in unused transition or group homes. Some had to move again when Hurricane Rita hit.

For the residents and staff of the group homes, the evacuation included 50 DSPs and 75 individuals with disabilities, along with administrators and bus drivers, leaving in three buses and three vans. They, along with family members of staff, stayed in a Houston hotel for a week, then evacuated to the Astrodome for one day, finally ending up in dorms at the Lakeview Methodist Conference Center in Palestine, Texas for 64 days. When the floodwaters receded, 69 individuals with disabilities remained at Lakeview with only 12 DSPs from New Orleans. To fill the staffing gap, VOA recruited temporary assistants from affiliates around the country.

The Katrina Experience

Of the DSPs interviewed, 52% evacuated with one or more individuals from VOA, including 41% who left with individuals with disabilities and their own family members, and 11% who left with individuals with disabilities but not with family members. An additional 24% evacuated alone, and 13% evacuated with family members but no people with disabilities. Some DSPs, who evacuated alone or with family, after checking in with VOA, learned they were needed and joined up with an evacuated person in another city.

DSPs packed three days of clothes and personal supplies for themselves, family members, and the people they supported. When the evacuation was extended, DSPs who provided supported living services purchased food, clothes, and supplies for the people they supported. Some DSPs kept receipts and were reimbursed, while others just absorbed the expenses. DSPs were thankful that VOA had made arrangements to directly deposit paychecks into their bank accounts throughout the evacuation.

DSPs experienced stress, trauma, anxiety, and confusion. In the beginning they didn’t know where family members were, if they had evacuated or even if they had survived. They heard unsubstantiated stories of dead bodies hanging from trees, devastation of their homes, loss of their personal belongings, shootings, and lootings. DSPs were unable to connect with friends, family, and neighbors to confirm these reports due to the breakdown in the communication infrastructure. In the early stages of the disaster, cell phones would not work because of failure of the telephone service in the New Orleans area code. VOA had an 800 number set up in the Alexandria, Virginia office and fielded a large number of calls from staff, family members, and other people supported.

As some DSPs left to attend to their families, those who remained supported additional people. DSPs worked 24 hours a day, 7 days a week, with little or no time off. Some family members were hired to work as DSPs, and others worked for free so that the DSP could get a break. DSPs had little opportunity to reflect on what was happening, talk about it, and grieve the multitude of losses they were experiencing. Their focus was on doing the work and helping their family members get through each day. DSPs worked months at a time with little personal privacy or freedom, working with strangers, and cohabitating with multiple families and the people with disabilities whom they supported. Many DSPs were only beginning their grieving and healing process at the time of the interviews.

The Recovery Experience

When the DSPs returned to New Orleans, housing was in short supply. Some lived in group homes or in trailers in the yards of group homes, and some stayed with friends or families. In many instances, the DSPs, their families, and the individuals they supported lived together because they could no longer afford the rents being charged in New Orleans. They lived in crowded conditions with multiple families sharing small spaces; sleeping on the floor, in a bathroom or under a sink; sharing hard-to-secure FEMA trailers; or living apart from their families so they could continue working. Many found it difficult or impossible to meet the demands of work and find time to secure new housing or benefits for themselves. They had homes that needed gutting and repair, but did not have time to begin, let alone finish, such daunting tasks. But, many said, “If we don’t work the hours, who will?”

By May 2006, 72 individuals receiving services from VOA had returned to six New Orleans area group homes supported by 50 DSPs. An additional 78 people were receiving services in their own homes, temporary shelters, or the homes of 76 Personal Care Attendants. By May 2007, more DSPs have returned to the area and to their jobs at VOA. More have gotten FEMA trailers and some have found permanent housing. Two disaster recovery assistance grants have provided resources to assist both individuals with disabilities and VOA staff to return to homes in the area.

Lessons and Recommendations

One lesson learned from the New Orleans VOA experience was how difficult it is for an organization, during a large-scale disaster, to not only find shelter, food, and clothing for the individuals it supports, but also help employees meet these same basic needs. VOA affiliates around the country provided relief staff at their own expense, incurring costs well over $200,000 in payroll and travel. Had VOA not been a large non-profit agency that could solicit donations it would never have survived these and other costs. FEMA did not recognize these expenses. VOA paid the Lakeview conference center from donations it raised; FEMA would not pay Lakeview because a county official in Palestine refused to designate their site as an official shelter. This indicates how badly the system is broken; even the Texas state Katrina office could not override this single person. Medicaid only allowed VOA to submit its regular billing for the group home clients and some slight increases in hours for its supportive living services. Clearly, there are large systemic issues that must be addressed.

Additionally, the DSPs interviewed made recommendations, based on their experience, for service providers to consider when making disaster response plans. They include:

  • Create an open dialogue with DSPs. Listen to and act upon their concerns.
  • Provide staff with credit cards or pre-paid cards that they can activate if evacuations last over three days.
  • Have a long-term accommodation plan so that, in the event of longer evacuations, staff have a place to go to with the people they support.
  • Give staff identification cards so they can “prove” they have an official role in the lives of people they support.
  • Obtain out of state emergency contact names and phone numbers for all staff. In an emergency these individuals can be contacted about the whereabouts and well-being of the DSPs and the people they support.
  • Have a national toll-free number, staffed 24 hours a day and housed outside the disaster area, so staff can call for assistance during evacuations.
  • Provide technology for DSPs to communicate with management during a crisis, such as pre-paid cell phones.
  • Develop an emergency per diem for staff and the people they support. Direct deposit this into their accounts so that staff do not have to worry about food, housing and transportation receipts in the midst of trauma.
  • Provide personal, individual thank you’s to each staff member during and after the disaster.
  • Provide some type of “disaster pay” with additional money for each hour worked, in addition to regular pay.
  • Create a national pool of relief staff.
  • Ensure that critical information about people supported (e.g., medications, support plans, health needs) is available via the Internet or at a central location so it’s available anywhere.
  • Provide company vehicles to evacuate staff and people with disabilities rather than requiring staff to use personal vehicles.
  • Work with FEMA and other federal agencies to plan for and make available staff housing during disasters.

Note

The study reported here was funded by the U.S. Department of Health and Human Services, Centers for Medicare and Medicaid Services, Contract to Volunteers of America, Sponsor Award 95-P-92225/3-01.