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Be an Ally of Self-Advocacy in the Time of COVID-19

The COVID-19 pandemic has disrupted the lives of people with disabilities in every way imaginable – from staffing shortages to difficulty accessing healthcare, providers and self-advocates alike have had to face scenarios they’ve never witnessed before. Despite these difficult times, there is always the opportunity to promote independence and self-advocacy for persons served.

Impact on the IDD Workforce

The pandemic has caused many IDD providers across the nation to experience a decrease in revenue. Social distancing measures resulting in a reduction of services, like employment supports and day programs, means less billing for services. Despite the continued need for IDD services, this reduction in revenue is leaving many IDD providers struggling to stay afloat.

This means that for many providers, they are now experiencing even more difficulty with maintaining stable hiring, onboarding, and training. ANCOR conducted a survey of 689 provider organizations and found the following:

  • 57% listed staffing as one of their largest challenges during the pandemic
  • 21% reported additional expenses associated with onboarding, such as a lack of open fingerprinting locations
  • 27% reported additional expenses associated with shifting training modalities
  • 33% of organizations have had to suspend hiring

Impact on People with IDD

So what does this all mean for the people served? Essentially, all the problems associated with high turnover of staff in IDD services have been exacerbated. People with IDD must constantly adjust to new DSPs or other caretakers, or be prepared if they do not show up at all. The lack of routine in services and service providers can be incredibly stressful for the individual and can also create poorer quality and continuity of care.

Because of this, enabling individuals with IDD to self-advocate as much as possible, and maintain their independence as much as possible, is even more critical during the time of COVID-19.

How to Serve as a Support and Ally for Self-Advocacy

Even in times of distress, the ability to support individuals’ independence is always something providers should maintain. The following are some ways to make sure individuals can self-advocate during the current pandemic:

1.     Talk to the People Served About the Situation

Regardless of the individual’s communication abilities, it is important to talk to the individuals served about the pandemic. Assuming they aren’t concerned or won’t understand can increase stress and anxiety. Share in their emotions, find ways of coping with the changes, and determine how much of their daily life is being affected by stay-at-home orders. Increasing their knowledge of the situation makes individuals better able to advocate for themselves during the pandemic.

2.     Adjust Goals and Services as Needed

Providers must be flexible in their approach so that individuals can still maintain as much independence as possible. It also helps ensure that any progress made toward goals is not stalled.

Consider this example: An individual has a goal to increase social interaction, and one way they accomplish this is by visiting their friend on the weekends. While physically visiting their friend may not be possible, the organization can help provide access to a web conferencing platform and the individual’s support team can teach them how to navigate it.

3.     Make Sure Available Services are Accessible

When sharing information and assisting individuals with their goals, it is important that any adjustments made to address social distancing should also be accessible for that individual. For example, sharing knowledge about coronavirus and COVID-19 should be presented in a way that meets the cognitive abilities of the individual. The Self Advocacy Resource and Technical Assistance Center has a wealth of information created by self-advocates, including information in plain language on COVID-19.

If a person served is still accessing education or employment services, it is also critical that staff understand the individual’s rights to have accommodations for these services. For example, individuals in supported employment could make use of teleworking policies in some instances as a reasonable accommodation. Additionally, providers can advocate to have certain services be available and billable via telecommunication, such as vocational rehabilitation counseling. The Council of State Governments offers other recommendations on making sure these services are made accessible to individuals with disabilities.

4.     Advocate for Appropriate Healthcare for People with IDD

Despite best efforts, there remains a chance that persons served could be infected with coronavirus or will require other medical attention during this time. In these instances, it is absolutely vital that providers help the persons served advocate for appropriate healthcare services.

In light of the recent pandemic, many hospitals and medical offices have required no-visitor policies. However, especially for individuals with cognitive disabilities, the inability to have a support person accompany them to a medical appointment creates a significant barrier to appropriate healthcare. As stated in an article from Disability Scoop, “such designated support personnel are not passive ‘visitors’, they can provide vital information that can impact clinical decisions and outcomes.”

The National Down Syndrome Society created a guide for addressing no-visitor policies, including communicating with the medical administrator in charge of creating these policies or, if necessary, contacting your state’s advocacy and protection agency.

5.     Provide Support to Families and Other Caregivers at Home

For individuals who live with family members, it is important for providers to help support these families by providing resources for proper continuity of care. For children and youth who usually access ABA services, Relias has created the ABA Parent Training Plan to help parents provide ABA tools and interventions for their children at home. Additionally, a team from the University of North Carolina at Chapel Hill created an online toolkit for supporting individuals with autism during the COVID-19 pandemic. Seek out these resources to address the needs of the people you serve and work with families to make sure their needs are being met while socially distancing.


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