Throughout the week of September 30, 2019, the National Council on Disability (NCD) and NDRN facilitated four virtual roundtable discussions on involuntary institutionalizations before, during and after disasters/emergencies. The series served as an opportunity for peer to peer engagement amongst Centers for Independent Living (CILs), Protection and Advocacy agencies (P&As) and Developmental Disabilities (DD) councils nationwide by centering promising practices and collective next steps. The following synopsis of recommendations, quick tips, requests and additional resources reflect the comments and contributions made by participants during this series.
Please Note: The effectiveness of each strategy and suggestion below will largely depend on organizational capacity, state-specific circumstances, productive partnerships and available resources. Collaborations amongst organizations/agencies are thus highly encouraged.
Summary of Roundtable Recommendations
- Coordinate Donations: organize personnel and donated resources from local University Centers for Excellence in Developmental Disabilities (UCEDD), CILs, DD Council and P&A to distribute equipment and supplies directly to disaster survivors with disabilities. This unified strategy can support survivors to maintain independence by sheltering in place rather than in an institutional setting. Some CILs have created trade centers containing durable medical equipment and consumable medical supplies readily available for rapid distribution in the event of an emergency.
- Capacity Building: Train individuals with disabilities to self-advocate for themselves by raising awareness around disability rights and sheltering options/accommodations. This strategy helps individuals with disabilities to make informed decisions concerning preparedness and the prevention of involuntary institutionalizations.
- Training: Develop a training for Emergency Managers, shelter staff, Health & Human Services staff, FEMA staff, county/local officials, law enforcement personnel, fire fighters and other first responders on their legal obligations and recommendations on ways to locally provide meaningful access for people with disabilities. This proactive advocacy approach can help educate, build relationships and enforce more equitable emergency management practices. The length, depth and frequency of these trainings may vary depending on local circumstances.
- Core Advisory Groups: Advocate for the creation of a core advisory group comprised of diverse disability centric organizations tasked with advising emergency management officials on practices throughout disasters/emergencies. The collective power of these groups can be used to influence disability inclusive preparedness plans, response activities and recovery priorities.
- Transportation Plans: Work with emergency management officials to ensure that accessible evacuation vehicles are available throughout disasters. CILs, P&As and DD Councils have also worked with nursing homes, residential homes and other care providers to review evacuation protocols and to verify the existence of realistic emergency plans.
- EM Management Apps: Work with emergency management officials to ensure that any mobile apps or digital resources are accessible for individuals with disabilities and that these mediums include relevant information about disaster resources/services provided by P&As, CILs, DD Councils UCEDs, etc. This strategy aims to ensure effective communication access as well as efficient outreach to people outside our organizational networks.
- Beware of Minimum ADA Standards: Be aware that often minimum ADA standards are used in shelter settings. Advocating for the expansion of access standards could possibly prevent the diversion of individuals with disabilities from general population shelters into institutions.
- Canvasing: Encourage city officials to organize canvassers who can comb through communities in search of people with disabilities who have sheltered in place and may need assistance after a disaster. Canvassers can also assist with evacuations to shelters if needed which prevents further institutionalizations.
- Client Choice Forms: An admissions document used within facilities/nursing homes to prioritize a person’s admission preferences in hopes of preventing involuntary institutionalization. Encouraging facilities to also document the cause of admission can help organizations target advocacy efforts and track disaster related institutionalizations.
- Commitment Hearings: P&As can consider the development of an action plan /MOUs to monitor commitment hearings after disasters. This strategy may be particularly useful in supporting disaster survivors with mental health considerations.
- CMS Waivers: Monitor the usage of disaster waivers regulated by Centers for Medicaid & Medicare Services (CMS). These waivers can be misused to divert/admit individuals with disabilities into institutional settings during disasters rather than ensuring they are served in the most integrated setting possible such as general population shelters. Unfortunately, these waivers are sometimes used by state officials to avoid proper planning and the resource allocation needed to serve people with disabilities throughout disasters.
- Integrated Shelters: Advocate for integrated shelters that have the capacity to meet medical needs rather than diverting people with disabilities into medical/special needs shelters or institutional settings.
- Guardianship: Remain vigilant of people with disabilities who are left behind in shelters by guardians or other acquaintances. Financial exploitation, abuse and neglect are significant areas of concern and could lead to institutionalization if no alternative support is made available.
- De-energization: Work with utility companies to identify consumers/clients who are electricity dependent and might be effected by preemptive power outages. Advocate for backup power, generators and external batteries.
- Hotlines & Contact Cards: Set up a local disaster hotline where people with disabilities can learn more about available resources/services. Also maintain corresponding contact information for callers so that follow-ups can be conducted in a timely manner. This strategy allows disability centric organizations to track those in need of assistance and to act should those individuals be at risk of involuntary institutionalization.
- Care Coordination: Work with managed care companies before a disaster to assess how institutionalization can be avoided and to plot out a pathway for community reintegration. CILs who have implemented this strategy acknowledge the cost saving benefits of community based supports vs. institutional care. Disability advocacy agencies can work with managed care plans to provide social determinant services while Medicaid covers medical services. Some plans may also be willing to cover housing assistance, down payments and other packaged services.
Other Top Tips & Takeaways
- Request local/statewide emergency plans from emergency management officials to assess the inclusion of people with disabilities
- Explore legal solutions such as litigation and structured negotiations when all other attempts to protect disability rights during disasters have been exhausted
- Advocate for your organization/committee/taskforce to be included within Mass Care Plans
- Advocate that your multiagency team be designated as the primary point of contact for emergency management officials who have questions/concerns related to survivors with disabilities
- Secure and circulate satellite phones to be used in the event of limited/no cell phone connectivity
- Embed in state Emergency Operation Centers to remain abreast of real-time updates/decision making and to be in close proximity with personnel responsible for emergency resources/services/activities
- Join or train Crisis intervention teams
- Join Functional Assessment Service Teams (FAST)
- Join long term recovery groups
- Include emergency preparedness as an independent living skill and offer related training to consumers/clients
- Identify accessible locations and hold local/county officials accountable for designating the use of these options as shelters/public resource centers
- Use public record requests under the freedom of information Act or other relevant state statutes to track how disaster funding is allocated
- Alert people with disabilities of inclusive EM changes or any new accessibility measures that have emerged since previous disasters. Remain mindful that some people may be traumatized or discouraged from seeking assistance based on previous negative experiences related to access/inclusion.
- Encourage FAST teams to work not only in shelters but to extend direct support to individuals with disabilities who shelter in place. Maintaining a roster of knowledgeable FAST team members can provide ground support when assisting people with disabilities to maintain independence in their homes/communities.
- Remember that P&As can use their access authority to enter into any disaster shelter
- Encourage personnel from your state department on mental health, state fire marshal’s office, state department of homeland security, state department on public safety, state department of children and family services, state department of health and human services, state department on aging and adult services etc., to join a multiagency disaster coalition focused on disability/access & functional needs. Working with these departments in partnership heightens the probability of receiving more rapid responses to requests for assistance/information.
- Build relationships with nursing homes to encourage the tracking of disaster related admissions
- Check state-specific HIPPA regulations as access to personally identifiable information will vary drastically depending on which local agencies/organizations are requesting information from healthcare providers
- Strive to ensure that people with disabilities who are the most impacted by disasters are included not just as storytellers but decision makers
- Urge facilities/institutions to also train residents, not just staff, on emergency procedures and disability inclusive response/safety skills
- Adequate funding resources for P&As and CILs
- Expedited funding for accessible, affordable and safe disaster housing
- Appeal for emergency management representatives to work with disability organizations as partners with meaningful access not just sources for equipment/supplies
- Disaster resources designed to meet the unique housing needs/emergency preparedness priorities of Rural communities
Additional Links & Resources
Review the NCD Report on Involuntary Institutionalizations Before and After Disasters
Learn more about the REAADI Act & DRMA
Join the NCIL EP Subcommittee
Check out the NDRN Emergency Management Page
This series was coordinated and created by Justice Shorter and Amy Nicholas.